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Category: Multiple Sclerosis (Page 1 of 2)

Personal Independence Payment (PIP) Telephone Assessment

January 5, 2023 / / 0 Comments

Personal Independence Payment (PIP) Telephone Assessment

Written by the Editor Renata M Barnes.

Today my daughter had her PIP assessment over the phone. My daughter told me she had four reminder text messages saying that her phone call appointment was scheduled for 09.15 hrs yet the assessor phoned at 08.45 am and when my daughter did not pick up phoned again at 09.10 am (where is that 09.15 may I ask, did the assessor have cognitive impairment to not phone at the scheduled time)?

The assessor was made aware I was listening in as the call was on loudspeaker.

The duration of the call lasted one hour and ten minutes and in that time my daughter was asked the same questions which were on the questionnaire she submitted.

Breach of GDPR

The caller never said the call was being recorded even though by law they have to say. Furthermore, the assessor did not offer a copy of the call recording which means that the assessor may have been working from home or the call was not recorded at all.

My daughter suffers from Multiple Sclerosis which is a progressive disorder that there is no cure.

There is (HSCT) hematopoietic stem cell transplantation currently not available on the NHS, which aims to wipe out and regrow the immune system similar to Lemtrada Alemtuzumab treatment which my daughter had last year.

Sensitive Questions

The assessor asked the same questions as what was on the form but went into some very alarming questions, some of which were so sensitive that could have caused a trigger in mental health patients, like have you ever had any suicidal thoughts or wanting to self-harm.

No one should be in a position to answer such a question because:

  1. It can cause a trigger and the person may not have had those thoughts before, but may now have a seed planted in their head to do it sometime in the future. When asking such a question you should not put those words directly into a person’s thoughts. It should be handled in a way of “how low do you feel on any given day” and “how do you feel when you are feeling low“? You should not say “have you had suicidal thoughts”? This is a TRIGGER. This type of questioning should only be done by a qualified professional, face-to-face (not over the phone).
  2. Secondly, the person being interviewed may not be truthful if there are many people present. Perhaps the person may not want to admit those thoughts in front of their carer, parent, or a total stranger. Someone who is feeling low and that question is asked, could theoretically not tell the truth to the person asking, yet the option would be there in their minds. One should never plant a seed in someone’s head. Only a professional psychologist or psychotherapist would assess a person’s mental health, not a complete stranger.
  3. The assessor should go by the medical evidence from the doctor’s reports and not ask these questions directly (by asking this question it is deemed as reversed psychology). Only a mental health professional should ask these questions. Talking about suicide is a taboo topic that is very sensitive, one needs to build trust between the person asking and the patient. People with suicidal thoughts may sometimes never admit to having them, so it is best to ask “how low a person is feeling” or “has ever felt” and open up a dialogue, rather than ask that question directly.

Further Reading:

https://lifehacker.com/how-to-plant-ideas-in-someones-mind-5715912

Does asking about suicide and related behaviors induce suicidal ideation? What is the evidence? https://pubmed.ncbi.nlm.nih.gov/24998511/

PIP assessor told claimant to ignore her ‘irrelevant’ suicide attempt… then challenged her son to a fight – Disability News Service

Degrading & Humiliating Questions

  1. Asking the person if they can wipe their posterior is degrading especially when admitting if one can or can’t to a stranger.
  2. What has that got to do with my daughter’s condition she is not in a wheelchair which was made clear at the beginning and is on her medical records. I understand that these questions may be asked but should be directed to the clinician and not the patient.

Work & Studying

PIP is a non-means tested benefit and when deciding a person’s eligibility for support their disability or condition and how it affects their life is taken into account. So what with the twenty questions such as “what is content marketing” etc? (what I have written now is called content).

  1. When my daughter was asked how she gets to university she said she takes a taxi. I noticed a pause from the assessor. So unless she was thinking that would cost an arm and leg, don’t tell me because I already know that is why I help my daughter pay for transportation. So despite telling the assessor my daughter does not walk far, why in the next line of questioning does the assessor ask how far can she walk in terms of a length of a bus? (I thought these questions were not relevant and were no longer being asked).
  2. When asked what work she does my daughter said marketing and how many hours per week. My daughter is the assistant editor of this website so she may work two hours one week or 16 hours the next. It depends on the assignments I give her. My daughter is not self-employed unlike myself. The assessor continued so what is my daughter’s role which she replied writing blog posts. Blog posts can take an hour or can take a whole day to do and it all depends on how many words are written and for what purpose. I have more than one website www.irenata.com I use a link wheel of websites to drive traffic from multiple directions. www.mrketingcardiff.com and www.ukcontentwriters.com to name a few.
  3. My daughter then was asked a question if there was a fire at the university how long would it take her to get out of the building? (How would she know that if she has never had a fire evacuation? The assessor continued to say this was a hypothetical question. This is ridiculous as how would my daughter know where she was at any given point in a worst-case scenario if the lifts did not work it would take her longer? How long is a piece of string? She could be on the top floor. (So does that mean if you escape a fire you have no problem with mobility).

Stress

My daughter was never asked about her stress levels although she did mention the frustration of her disability. Stress and frustration can coincide together but they can also have different meanings. The assessor did not go into too much detail other than how my daughter remembers to take her medication and who feeds the cat (yes that was asked). https://disabledentrepreneur.uk/stress-cognitive-function/

Stress is a complicated disorder in itself. Stress can be prolonged whilst frustration is short-term. The stress of rewriting a blog post or assignment due to a lack of concentration or increased fatigue can cause frustration.

Medication

My daughter was asked what medication she was on and the one medication the assessor said and I quote “Hold on I need to Google it“, this is no word of a lie and I can prove this was said, just don’t ask me how.

Irrelevant Questions

  1. . Who lives with you (why is that relevant)?
  2. How many bedrooms have you got? (and the point is what)?
  3. Who pays the bills?
  4. How long have you done online grocery shopping?
  5. So you have a cat, who feeds the cat, and why?

Pointless Questions!

Final Thoughts From the Editor

PIP – medical assessor recommends zero points – Finance and benefits – MS Society UK | Forum

I am really looking forward to my assessment because it will open a can of worms regarding the GP support I have not had.

My daughter’s call lasted over an hour, this is not going to happen with me as time is money and I already wasted one hour today listening in to a call that was pointless.

“The assessor insinuated because my daughter has a part-time job and is studying it may look like there is nothing wrong with her even though it is her physical well-being that is affected and not her mental health.

I did not think this should be used as a fit for work assessment, but more so as a health and well-being assessment and the prognosis of the ability to function from day to day.

I have disabilities but I still can work by managing my health in such a way it does not hinder me. It is the outside world I have a problem with, because of my OCD and social disconnection issues. However, if I was put in a situation where it was an emergency and had to leave my home, I would worry about the consequences of my disorder afterward. I have literally thrown away things I have not been able to salvage or disinfect. I am the happiest in my own company with my own surroundings.

I run several businesses online for my clients but that does not make me fit to work in the physical world. One should not draw conclusions about a person’s ability because from one day to the next the ability to function can be impaired.

For my own assessment, I have given them enough information, that I envisage my call will be halved. I most certainly will not answer questions like what my daughter was asked today, because they have enough evidence on file. I am not going to answer questions such as am I capable of wiping my own ar#e?

My daughter should have stated she documents her health online but for some reason omitted this. We will have to wait on the decision in 8 weeks’ time.

Multiple Sclerosis is an auto-immune disease that attacks healthy white cells. The lesions that can affect the brain and spinal cord can cause a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation, or balance. It is an incurable disease with lifelong symptoms that can sometimes cause serious disability, although it can occasionally be mild. The average life expectancy is slightly reduced for people with MS and symptoms can be alleviated with different courses of treatments. In most cases, people get diagnosed in their 20s or 30s but it has been known that patients have shown symptoms as young as 15 years of age. In fact, it can develop at any age. It’s about 2 to 3 times more common in women than men.

MS is one of the most common causes of disability in younger adults.

https://www.nhs.uk/conditions/multiple-sclerosis/symptoms/

The most common symptoms include:

Other than fatigue, vision, numbness, and pain nothing else was discussed in the above list or the fact that stress and anxiety can cause MS relapses.

So why is the government somehow wanting people with disabilities to jump through hoops (quite literally) to prove they are disabled when their medical records should suffice?

I would have put a stop to the questioning and said so what do you know about multiple sclerosis or in my case OCD & cerebellar atrophy. Secondly, I would have said… so I gave you access to my medical records but clearly, you have not read them.

I reckon these assessors have to do something to sift through the scammers in this world, but the people that genuinely need help, are made to feel belittled, degraded, and inadequate just to get the extra bit of help.

Further Reading

PIP assessor walked out! – Benefits and Work Forum

Pip assessor has lied – Benefits and Work Forum

PIP Assessors Get £50 Bonuses For Meeting Targets Says Whistleblower | Same Difference (samedifference1.com)

PIP investigation: ‘Lie after lie after lie’ – Disability News Service

Fury As Nurses Offered Private Healthcare Perk To Become DWP Benefits Assessors | HuffPost UK News (huffingtonpost.co.uk)

‘Humiliating’ PIP Assessments Being Held At Luxury Spa Owned By Millionaire Duncan Bannatyne | HuffPost UK News (huffingtonpost.co.uk)

MS Relapses

With multiple sclerosis, the weather plays an important factor and people suffering from MS can relapse when the weather is too hot or too cold.

MS and Cold Weather: Are MS Symptoms Worse During Winter Months? (webmd.com)

Cold Weather and MS Symptoms: Effects and How to Cope (verywellhealth.com)

Therefore with the rise in the cost of living and keeping one’s home warm the extra bit of money helps. Yet this was not discussed, which tells me the assessor had no knowledge of Multiple Sclerosis.

The assessor said I quote so you are making an effort to work and let the disability stop you, sorry I am not being patronized even though it came across that way.

I did want to put my two penneth in, but I figured that it was best to keep my mouth shut and see what happens when the decision is made for my daughter.

The Assessor

The assessor should have:

  1. Stuck to the given scheduled time and not rang half an hour earlier.
  2. Said if the call was being recorded or not and asked the interviewee if they wanted a copy of the call recording.
  3. The assessor should have also introduced herself properly (which she did not) and said what she was qualified in (which again she didn’t).
  4. The assessor should have acknowledged the other person listening to the call but chose to ignore them (which was deemed unprofessional).
  5. The assessor should not ask extremely sensitive questions to cause a trigger.
  6. The assessor should have gone by the medical records to gain all the information she needed without humiliating the interviewee.
  7. The assessor should not have asked irrelevant questions such as who feeds the cat and why?
  8. The assessor should not have spoken about her own health issues as that is unprofessional.
  9. Asked how long the household did online shopping (how is that relevant to the claimant when we were in lockdown which had nothing to do with the claimant’s illness).
  10. Asked to explain what content was in my daughter’s job role.

As for me, let the circus begin, I can’t wait!

#personalindependencepayments #pip #pipassessment #pipassessor #multiplesclerosis #ms #humiliation #suicidalthoughts #triggers #telphoneassessments #callrecordings #gdpr

Personal Independence Payment (PIP) Assessments

December 23, 2022 / / 1 Comment

Personal Independence Payment (PIP) Assessments

What is a PIP assessment?

Under normal circumstances a  PIP assessment is an opportunity for you to talk about how your condition affects you – it’s not a diagnosis of your condition or a medical examination.

The DWP will use evidence from the assessment to help them decide if they need PIP.

Therefore it is best to make your own report and detail everything about your illness and how you manage your daily activities.

An in-depth report is evidence that can be used against the DWP if your claim is denied. Having a phone call you cannot record the conversation.

Concluding the call you should ask for a copy of the recording which you are entitled to have by law.

People have the right to request copies of the data that is held by an organization, the ability to search and copy recorded calls will be necessary. Requests of this type must be responded to within one month. GDPR and Legitimate Interest. https://www.compliancejunction.com/gdpr-rules-recording-calls/

A health professional will carry out your assessment, write a report and send it to the DWP.

Talking about how your condition affects you

A helpful guide on the Citizens Advice website says that you should be prepared to talk about how your condition affects you even if you have already detailed it on your PIP claim form.

This can be hard to do, but it will really help if you can talk about:

  • the kind of things you have difficulty with, or can’t do at all – for example, walking up steps without help or remembering to go to appointments
  • how your condition affects you from day to day
  • what a bad day is like for you – for example, ‘On a bad day, I can’t walk at all because my injured leg hurts so much’ or ‘On a bad day, I’m so depressed I can’t concentrate on anything

It is a good idea to have your own copy of your PIP claim form with you for telephone assessment, that way you can refer back to it.

I strongly suggest on headed paper write a concise report detailing your illness without leaving out a single thing.

Discrimination

A disabled lawyer launched a ground-breaking legal case against the Department for Work and Pensions (DWP) over his claim that it deliberately discriminated against him in rejecting his claim for disability benefits. Daniel Donaldson founder of the Scottish social enterprise law firm Legal Spark, believed DWP chose to discriminate against him and other people with mental health conditions in the way it has dealt with their personal independence payment (PIP) claims.

This is very worrying if the DWP has discriminated against a lawyer. Although the article about Donal Donaldson was published in 2018 it is very worrying how the government is playing God with people’s lives who genuinely need help.

Daniel ended up taking the DWP to Glasgow Sheriff Court and was seeking nearly £5,000 in damages, to cover bank charges, the removal of his bus pass, and £4,000 in compensation for the discrimination.

Donaldson sued the DWP Equality Act against the Scottish government because it failed to take on responsibility for PIP from DWP when it had the powers to do so in 2016.

A Scottish government spokesman said:

“We have repeatedly called on the UK government to halt the roll-out of PIP in Scotland, most recently following the report of the UN Committee on the Rights of Persons with Disabilities which called for a review of PIP due to the damage it is causing people”.

Donaldson said the “UK government had created “a hostile and degrading environment for disabled people” by “using public policy to strip people of their statutory entitlement to benefits”, including PIP and employment and support allowance (ESA)”.

You can read the full story here: Disabled solicitor launches ground-breaking legal case over PIP discrimination – Disability News Service

Useful Links

Discrimination: your rights: What you can do – GOV.UK (www.gov.uk)

Equality Advisory Support Service (EASS) – GOV.UK (www.gov.uk)

My Concerns about the up-and-coming assessment for my daughter

Circus Monkey!

Assistant Editor

My concern is my daughter who has Multiple Sclerosis and is also the assistant editor of ‘Disabled Entrepreneur – Disability UK Journal’, according to the MS Society, the DWP is making it even more difficult to claim. PIP fails | MS Society

It is soul-destroying having to justify you have an illness. People should not have to be made to perform like circus monkeys to prove they are ill. The assessment is on the 5th of January 2023. I will be listening to the call.

My daughter has already expressed anxiety and stress and is worried about taking the call.

PIP Email Address

I have advised my daughter to write a letter and attach it to an email prior to the assessment call, this adds extra weight to your claim and creates a carbon footprint of evidence.

PIP say they do not have an email address even though they do😂 : contactus@capita-pip.co.uk

“Medical evidence should suffice. A primary neurologist consultant is far more qualified than any PIP assessor”.

An Assessors Qualifications

According to Capita’s, website to be an assessor you may be a nurse, occupational therapist, paramedic, physiotherapist, pharmacist, speech and language therapist, or clinical psychologist who is looking for a change, for new opportunities.

As a Disability Assessor, you’ll:

  • be a fully qualified healthcare professional 
  • have a minimum of one year’s post-full registration experience
  • be fully registered with a relevant UK regulatory body (NMC/HCPC/GPhC or other), without restriction or conditions and with a valid PIN
  • live and be based in the UK 
  • have sound written communication skills
  • be able to manage conversations and ask questions effectively
  • be confident with computers 

Who we’re looking for | Capita PIP Careers (capitapipjobs.co.uk)

This proves that they do not have to have to be specialists in any disorder. A nurse has general knowledge of how the body works but is not specialized in any field other than nursing.

According to the Royal College of Nursing:

All registered nurses must choose from one of four specialisms as part of their nursing degree – adult nursing, children’s nursing, mental health nursing, or learning disability nursing. It’s possible to change after graduating, but this doesn’t mean your career is decided. 

Adult nursing

Adult nurses work with patients over 18. They can work in hospitals or in community settings such as people’s homes, health centers or nursing homes.  Once qualified, they can take extra courses to specialize in areas such as cancer care, women’s health, accident and emergency, critical care, practice nursing, health visiting or school nursing.

Children’s nursing

Children’s nurses work with children and young people up to 19 years old and can work in a variety of settings, from specialist baby care units to adolescent units. Children react to illness in a very different way from adults, and children’s nurses are specially trained to understand their needs. Children’s nurses also support, advise and educate parents and carers. Once qualified, they can specialize in areas such as health visiting, school nursing, intensive care, child safeguarding, and cancer care.

You cannot confuse a nurse with a doctor or specialist. A nurse will not have the same qualifications as a doctor, neurologist, consultant, or psychiatrist.

What is Multiple Sclerosis

Multiple Sclerosis (MS) is a chronic, neurodegenerative condition for which there is currently no cure.

In MS, the body’s immune system attacks myelin, the protective cover around nerve fibers. Damage, which can occur anywhere in the central nervous system, interferes with messages traveling from the brain and spinal cord to other parts of the body. Symptoms are many and varied but unique to each person. They can include problems with balance, vision, the bladder, bowel, speech, memory, fatigue, and painful muscle spasms, among many other things. MS affects over 100,000 people in the UK, many of whom experience their first symptoms during the peak of their working lives, in their 20s and 30s. MS is both a fluctuating and progressive condition. While the progression and symptoms of MS vary from individual to individual, primary progressive MS affects around 10 to 15% of people with MS. This is progressive from the very first symptoms. The remaining 85% of people with MS are initially diagnosed with relapsing forms of MS, where people have distinct attacks of symptoms with the underlying damage building up over time.

Many people with MS will go on to develop secondary progressive MS within 15 years of being diagnosed.

“Having MS is debilitating – it shouldn’t be made harder by a welfare system that is humiliating, degrading, and adds more stress which can lead to relapses. Stressing an individual out to the point that they relapse could consequently make that person lose their mobility and become bedridden”.

If a person with Multiple Sclerosis relapses because of the stress they endure fighting for something that should help them, then the government should be made accountable.

Relationship between stress and relapse in multiple sclerosis: Part I. Important features – PubMed (nih.gov)

From a personal perspective, my daughter did actually relapse after being frustrated with her laptop not booting up consequently hurling it across the room. So stress is definitely a factor, that should not be ignored.

PIP-2018-2021-update-MS-SOCIETY

#personalindependencepayments #pip #ms #multiplesclerosis #pipassessment #stress #anxiety #dwp #capita #msrelapses

My GP & Neurologist’s Negligence

December 13, 2022 / / 0 Comments

My GP and Neurologist‘s Negligence

I phoned my GP today after waiting two months for a prescription that my neurologist consultant had prescribed for my unbearable pain which is caused as a result of my multiple sclerosis and yet, to this day I have not had the medication.

When I queried it today, the receptionist I spoke with stated that he was not ‘medically trained’ to read the letter sent from the neurologist at the hospital and that I would have to wait for the doctor to read it and approve. This goes to show the mentality of the receptionists at my GP as mentioned previously, he stated he couldn’t read my letter as he was not ‘medically trained’, when in reality, he shouldn’t be reading my letter at all as that would breach Data Protection Act 2015. None the less, I gave the GP the benefit of the doubt and continued to wait for my medication.

A few weeks go by and I get a call from the GP, although to my surprise it is not the doctor but a different receptionist. The woman I spoke with informed me that she was passing on a message from the doctor stating I had to have a consultation to discuss the medication at hand. When I questioned why I would need to discuss the medication when I had already done so with my consultant, she could not reply. As a result of this, it meant that I would have to ring up the GP at 8am the following day to fight for an appointment to then have to wait all day for a doctor to give me a call back.

Why do I need a consultation with the GP when my consultant who is a qualified neurologist has prescribed them?

I believe this is to test people and for them to beg to get medication. So am I to believe my general practitioner doctor is more qualified than the neurologist? This is now causing me anxiety and stress. Stress can lead to MS relapse.

So they cannot book an appointment at the time of the phone call, you have to be a good soldier and do as they ask.

When I told my mother who is also my carer, she said she would intervene and write a letter (which never gets answered, may I add) demanding that I have the medication otherwise my mother would take it up with the ombudsman.

I am worried I will get kicked out of the surgery as I am dependent on my drugs for the excruciating pain I endure, so told her not to pursue it. I have been threatened by this surgery before regarding not agreeing with some of the things they say. Both my mother and I have agreed that I contact my primary neurologist and explain not only have I fallen through the gaps regarding getting my monthly blood as stipulated on the Lemtrada website but my GP is refusing to give me the medication that the consultant requested.

This is Medical Negligence!

I am documenting this as evidence that my quality of life is being compromised because of my GP not giving me my medication and my concerns that my blood is not being tested to monitor any changes to catch them early.

This will be forwarded to PIP (Personal Independence Payments).

I will update again once I get further information.

My GP Google Reviews

Update 15/12/22

I phoned my GP to book a consultation under duress otherwise I would have had hope in hell to get my medication, even though it was prescribed by a neurologist.

The doctor did phone me back only to ask me what I needed to talk about…OMG.

When I said about my medication she continued to ask which medication I was referring to, even though supposedly there was a message on my notes. She then asked if I am capable to take them…..what the hell?

What a waste of time and resources.

The doctor did not even know why she was ringing me other than me requesting a callback which I was put on the spot to do, otherwise, I would not have had my meds.

And people wonder why they struggle to get a GP appointment, this is a perfect example as to how the GP waste resources, time and effort. This appointment could have been utilised for someone who actually needed it, not for a chit chat.

Further Reading:

https://cavuhb.nhs.wales/

Prescribing in general practice (bma.org.uk)

Public Services Ombudsman for Wales

https://www.jcpsolicitors.co.uk

https://www.thorntons-law.co.uk/knowledge/to-sue-or-not-after-medical-negligence

Lemtrada (alemtuzumab) Sanofi Genzyme Deaths

Update 20/12/22 – Non-existent blood tests!

My non-existent blood tests (required by law).

After losing my patience waiting for my non-existence letter to arrive to notify me to have my blood test done, I decided to contact my primary neurologist by email. Baring in mind I am supposed to have a blood test done every month to prevent/pick up early, transfusion related conditions such as Immune Thrombocytopenic Purpura (ITP), kidney problems/anti-GBM disease and problems of the thyroid gland (hypo/hyperthyroidism). As I am writing this, it has been 7 weeks since my last blood test and yet my primary consultant could not care less, he is obviously happy I have lined his pockets ready for Christmas.

Granted he was quick to respond.

The unfortunate thing is, had I of not emailed him, he would have been none the wiser that I had not had any blood work done. Surely, as my primary consultant, it is his responsibility to ensure that as his patient, I am having the necessary tests to ensure I am ok.

Not only that, he confirmed my blood test on the 2nd November was okay, would he have not noticed that I was not scheduled for a repeat test for the following month? Would he have not spoken with the other neurologist that I saw last? Do people within the hospital even communicate with one another, or is that my responsibility too?

I did mention that I understood Royal Mail was on strike and the nurses and emergency service are following suit. I was concerned that I have not had any blood tests done and my neurologist replied to sort it out myself and phone his secretary.

Why should I go out of my way to chase blood tests?

I have always had my blood taken at the hospital so why suggest I have them done at my GP who is also as useful as a chocolate fireguard?

Why move the goalposts? Why try to fix something that is not broken, meaning continue to have my blood taken at the hospital?

It is the responsibility of the consultant to make sure I have a blood test done and not down to me to do their job for them.

I can see pound signs of their lack of empathy and aftercare for their patient.

If something is found that could have been prevented all hell will break loose, mark my words.

What the Government Has to Say:

Lemtrada▼ (alemtuzumab): updated restrictions and strengthened monitoring requirements following a review of serious cardiovascular and immune-mediated reactions

A review of the benefits and risks of alemtuzumab (including fatal reactions) in the treatment of multiple sclerosis has now concluded and recommended a revised indication, additional contraindications, and strengthened monitoring requirements before, during, and after treatment. Patients offered alemtuzumab should be alerted to the early risks of cardiovascular events and thrombocytopenia around the time of infusion and to the delayed risk of immune-mediated reactions. Healthcare professionals should inform patients what to do if they develop any symptoms of these disorders.

https://www.gov.uk/drug-safety-update/lemtrada-alemtuzumab

https://www.ema.europa.eu/en/medicines/human/referrals/lemtrada

Meeting highlights from the Pharmacovigilance Risk Assessment Committee (PRAC) 28-31 October 2019 | European Medicines Agency (europa.eu)

He has had his commission so I am not a priority even though under the Alemtuzumab Guidelines I have to have my blood checked every month.

lemtrada-article-20-procedure-lemtrada-multiple-sclerosis-measures-minimise-risk-serious-side_en

My primary consultant came up with all these fancy words as if I am supposed to understand even though I am not medically trained.

And we wonder why the NHS is in the state it is in because no one seems to be doing their jobs properly, yet everyone is complaining they are overworked and underpaid.

“Be lucky you have a job is all I can say”.

Lucky Black Cat
My MS Therapy Cat (Tibbles).

#gpnegiligence #prescribedmedication #neurology #neurologist #neurologistconsultant #consultant #specialist #ms #multiplesclerosis #MeddygfaAlbanySurgery

Multiple Sclerosis Monthly Blood Tests as required by Alemtuzumab Lemrada.com

November 30, 2022 / / 0 Comments
Relapsing MS Stories: Speaking Up About Treatment (lemtrada.com)

Multiple Sclerosis Monthly Blood Tests as required by Alemtuzumab Lemrada.com

As my followers know I suffer from multiple sclerosis and have had the ‘alemtuzumab’ treatment which clearly stipulates on the Lemtrada website that patients should have monthly blood tests done to help detect side effects early.

Upon having a recent consultation at Rockwood Hospital Cardiff, part of the UHW Neurology Department, the consultant asked me when did I have my blood test done. Surely he should have had that in front of him and not relied on a patient to update him. This is poor management and medical care.

So after it was established I have not had my blood test done for a good few months, he said he would arrange for them to be done every month because during Covid Lockdown it was every 3 months and we are no longer in lockdown, so there should be no excuse. (This is against the terms of Lemtrada policy).

Lemtrada website says: BEGIN YOUR MONTHLY MONITORING

Certain side effects of LEMTRADA can happen months and even years after treatment. That’s why it is important to begin monitoring after your first infusion and continue regular monitoring until 4 years after your last infusion. Monitoring can help your healthcare team find potential side effects early.

What to Expect After LEMTRADA® (alemtuzumab) Infusion Treatment

So we are nearly in the month of December and after my consultation in October, I am still waiting for a letter to see when I should have my blood test done.

I should not be the one to be chasing them. It is their job to make sure patients have regular blood tests!

This in my eyes is NHS medical negligence.

Clearly the consultant I went to see did know what he was doing because the letter he wrote to my doctor contradicted his statement as I am on the highest dosage of painkillers Gabapentin. I wrote to my neurologist and asked for the error to be rectified, which has now been updated.

https://www.lemtrada.com/what-to-expect/after-treatment

https://products.sanofi.us/lemtrada/lemtrada.html#medguide

“I should not be going out of my way to remind them to do their jobs, it is their responsibility to make sure I have my monthly blood tests done”.

Update 09/12/22

It has been five months since my last treatment and I have only had one blood test done. I am going to see if the meds that the consultant prescribed are ready for collection and if not I will be writing a stern email to the Professor of Neurology.

#multiplesclerosis #ms #alemtuzumab #sanofi #lemtrada #medicalnegligence #neurology #neurologist #nhs #uhw #rockwoodhospital

Lucky Black Cat

PIP Personal Independence Payment Delays And The Repercussions On Mental & Physical Health.

August 24, 2022 / / 0 Comments

PIP Personal Independence Payment Delays And The Repercussions On Mental & Physical Health.

Disclaimer Scotland: People in Scotland will no longer be able to make a new claim for Personal Independence Payment (PIP) from August 29 when the benefit will be replaced by Adult Disability Payment (ADP) in all 32 council areas across the country. At present, 13 local authorities are now offering ADP to adults over 16 and under State Pension age living with a disability, long-term illness or a physical or mental health condition.

Most people don’t like complaining and will not make a formal complaint about anything let alone the DWP, because they believe it would be a waste of time and could cause a knock-on effect on their other benefits.  For those that do complain and, after many months of pursuing, end up giving up.  The ones that are determined come away with a pathetic apology and feel they have hit a brick wall. They accept the mediocre admission by the DWP or Atos, Capita, that these organizations made a mistake and nothing else happens, their mental health is simply disregarded without a second thought.

ANN ABRAHAMS – REPORT

However, the most recently released report reveals that a tiny number of people pursue their complaints further and end up being awarded large sums in compensation. The report is called ‘Small mistakes, big consequences’ and is written by Ann Abrahams, the Parliamentary and Health Service Ombudsman. Ann Abraham should be a name that should stand out as well as your local MP.

“Remember nothing happens quickly after all these people are not in a hurry to find money to put food on their tables, only you are”…

(The report can be downloaded using the following link: Parliamentary and Health Service Ombudsman Small mistakes, big consequences HC 6 (publishing.service.gov.uk)

MEDICAL EVIDENCE

Your illnesses and disabilities should be corroborated with medical evidence and letters from GPs and consultants. This payment is to help with your daily living and is not an alternative to being a benefit bum and living off benefits. This payment is for people who truly deserve the extra money because of their disabilities. The reason why the Government is clamping down is because of too many fake, lazy individuals that see this as free money.

DELAYS

Delays are causing people to become ill through worry and stress. https://www.mind.org.uk/information-support/types-of-mental-health-problems/stress/what-is-stress/ Hundreds of thousands of disabled people are having to wait for £300 million of vital support, according to a new analysis from Citizens Advice.

Citizens Advice said: “PIP, which can see people with an illness, disability or mental health condition receive up to £157 a week, is a lifeline for millions of people, yet the government is playing with people’s lives and their health.

There are currently around 327,000 Disabled people on the waiting list, with an average waiting time of five months. Citizens Advice projects this means £300 million of payments that would be awarded are being held up, after all the government needs to look after themselves first before thinking about the other half of the population. You are not their priority, although you should be.

“Waiting for this payment is having a huge impact on people’s lives. Delays in assessment mean that support is held up, forcing people into impossible choices as they try to make ends meet.”

STATISTICS

  • People are facing humiliation as 1 in 5 people have needed to go to a food bank in the last 3 months who have also had an issue with PIP. Many of those waiting for a decision will also be eligible for the £150 disability benefits cost-of-living support payment but are unlikely to get it before October’s mammoth energy price hike.
  • There are more people coming to Citizens Advice for help with PIP than with any other issue in fact an astonishing 41% more than any other issue.
  • Around 150 people are contacting advisors at Citizens Advice every hour for one-to-one help, and its webpage on “How the DWP makes a decision on PIP claims” had 27,700 page views last month, up 56% year on year.

CITIZENS ADVICE

Citizens Advice is calling on the Government to take urgent action to relieve pressure in the system and help get money to people who desperately need it. It is calling for an emergency plan from the Secretary of State for Work and Pensions to urgently tackle this backlog, including reducing the number of claimants required to have a medical assessment, which is the main reason for these delays – and extending the award period so people have to reclaim less often.

The severe PIP assessment backlog is not just affecting new claimants but also those seeking reassessments or needing extensions to their claims. These lengthy delays are having a substantial impact on their applications for other benefits such as blue parking badges, bus passes, and Motability vehicles.” https://disabledentrepreneur.uk/bus-passes-for-the-disabled/

Backlogs in the disability benefit assessment system are having significant knock-on effects on disabled people’s ability to live independently, new evidence has shown.

These delays are also causing further turmoil for disabled people whose support needs have increased and believe they should now be entitled to higher PIP payments.

The evidence has come from the Benefits and Work website, which has heard from a string of existing PIP recipients who say the delays are causing tremendous emotional distress and significant problems.

In March, Disability News Service (DNS) reported how the backlog of disabled people waiting for a PIP assessment had more than trebled in the last five years, from 88,500 in October 2016 to nearly 312,000 by December 2021.

DNS has also reported on similar problems with the Access to Work system, with DWP figures showing the number of disabled people waiting for decisions on their applications has more than quadrupled in a year from just 4,890 in March 2021 to 20,909 in March this year.

One of the ways the Department for Work and Pensions (DWP) is dealing with the lengthening PIP assessment backlog is by providing temporary (3 months), short-term extensions to PIP claimants who are waiting for their benefits to be reviewed.

Editors’ Opinion – “Do they not have enough unemployed people to do a bit of paperwork? How about outsourcing the work would be another idea and finally only appraise the people that have medical evidence to corroborate their illnesses”?

The Government is purposely dragging its heels in order to save money.

“This is Evil, a Disgrace, and a Shambles”.

Vicky Foxcroft, Labour’s shadow minister for disabled people said:

“With the cost-of-living crisis hitting disabled people particularly hard, it is shocking this government has not got a grip of the PIP backlog, which has been going on for months now”.

“Short-term fixes aren’t enough anymore. Disabled people deserve so much better than this; Tory ministers need to get a grip on this backlog, especially given the impact it is now having on other benefits for disabled people.

“A future Labour government would invest properly in disabled people, ensuring they had the support needed.”

A DWP spokesperson said:

“We closely monitor the progress of PIP cases awaiting assessment and take all steps possible to ensure claimants receive the vital support they require”.

“We can and do make in-house decisions on award reviews without referral to assessment providers where necessary and use a blend of phone, video, and face-to-face assessments to ensure support is given as quickly as possible.”

People Who Suffer From OCD

Daily Living Descriptor 6 – Obsessive Compulsive Disorder

The Upper Tribunal has recently made a decision (CPIP/3760/2016) about how people with OCD can claim points under PIP.

BACKGROUND

The PIP Regulations say that people who can’t do an activity listed in one of the PIP descriptors safely, repeatedly, to an acceptable standard, and no more than twice as slowly as a non-disabled person, shouldn’t be counted as being able to do that activity for the purposes of PIP. (I keep a note of my health online and so does my daughter. I think as a sufferer of OCD the form does not actually cover all the different types of OCD). https://disabledentrepreneur.uk/category/renatas-online-journal/ & https://disabledentrepreneur.uk/category/zena-online-journal/

Therefore there has been some confusion about people with OCD, who usually can do an activity perfectly well, but have to do it over and over again or in particular ways or at particular times.

(Assessors who are not specialized in diagnosing OCD or any other illness should not have any input about the claim – just because they have passed e-learning does not make them any more qualified than you or me).

The PIP descriptors and the regulations didn’t deal with this sort of situation very well and so lots of people with OCD lost out on awards. Now the Upper Tribunal has looked at the issue and made a judgment that will help people with OCD to earn points for PIP.

WHAT THE UPPER TRIBUNAL DECIDED

The Upper Tribunal case was about a person who took a very long time to get dressed because their OCD meant they had to repetitively try on lots of different outfits until she found one she was happy to wear. The DWP argued that this long time didn’t count for the purposes of PIP because it was just the person’s choice to try lots of clothes on. The Upper Tribunal, however, held that because the person’s hesitations and repetitive behavior were ‘the consequence of her health condition’, she was entitled to points because it took her more than twice as long as a non-disabled person to dress. But the UT did say that if the longer time had not been a consequence of her health condition, she would not have been entitled to points.

This decision is important because the principle that delays in being able to complete a task because of the consequences of a mental health condition like OCD can be applied to all descriptors, not just dressing. So a person with OCD who can eat perfectly well but who takes an hour to eat because of obsessive rituals about arranging the table, or a person who can wash perfectly well but who does so eleven times three times a day, could claim points under those PIP descriptors.

WHAT THIS MEANS FOR YOU

If you have OCD for example and have obsessive rituals or other behavior which means that you take much longer to do activities of daily living like cooking, eating, dressing, and so on, then you now can use this Upper Tribunal decision to strengthen your argument for claiming PIP.

Note that you will still have to be able to show that you have been diagnosed with OCD or a similar mental health condition and you do in fact have behavior that means you take much longer than a non-disabled person to complete daily living activities. Good strong evidence from people who know you will be needed.

You will also have to show that your behavior is a consequence of your mental health condition and not just your own preferred way of doing things. Showing that you can’t change the way you do things even if it is against your interests will be useful – eg that you miss appointments because you can’t get there in time owing to a dressing ritual.

DIFFERENT TYPES OF OCD

Different Types of OCD

OCD is a very complicated illness it is not just about washing or checking or taking too long to shower, dress or cook food. It may be the fear of germ contamination (as I have). I know logically we are surrounded by germs but the thought of contracting something or being harmed through direct contact with an unsanitized area does not bear thinking about. I am cocooned in my own surrounding where I can keep my intrusive thoughts under control as best I can. My disabilities are not just OCD, they are Depression, Social Disconnection, and Cognitive Impairment (Cerebellar Atrophy) to name a few.

TIMING

As with everything, it all takes time and you are not a priority.

Upper Tribunal decisions take time for your claims, mandatory reconsideration, and appeals, and it may take some months before DWP and assessors finally make the decision.

Unfortunately for you, this causes considerable stress on your mental health and pressure on your finances. You can either suffer and do nothing other than wait or you could complain.

If your appeal is taking longer than expected you have grounds to contact the ombudsman.

If you have been treated unfairly and given the DWP and Tribunal time to respond and they have not within the timeframe then you need to start getting all your evidence together to build a case. You can take it even further and take it to an Ombudsman (Last Resort).

You can read the full judgement here: https://www.gov.uk/…/ml-v-secretary-of-state-for-work-and-p…

USEFUL LINKS:

PIP delays leave disabled people hundreds of millions of pounds out of pocket – Citizens Advice

How do some claimants get thousands of £££ in DWP compensation (benefitsandwork.co.uk)

How to use DWP for compensation? – LegalBeagles Forum

http://en.wikipedia.org/wiki/Upper_Tribunal

http://www.justice.gov.uk/about/hmcts/tribunals

adminappeals@hmcts.gsi.gov.uk

Suing DWP for compensation … — Scope | Disability forum

Complain to us: getting started | Parliamentary and Health Service Ombudsman (PHSO)

FINAL THOUGHTS FROM THE EDITOR!

If an organization or entity causes you to become unwell because of their actions, they should be held responsible and should pay for damages.

If people are becoming mentally and physically unwell because of the Government’s actions then the claimants should be awarded compensation.

If you have been affected by:

  • Emotional Distress (causing, stress, anxiety, depression, intrusive thoughts, and making your mental illness worse).
  • Indirect Discrimination (entity assuming because you have an invisible illness you are classed as normal).
  • Harassment
  • Intimidation
  • Humiliation (having to go to food banks or being pitied because you are disabled).

Consequences

If your illness gets worse because of an entity’s direct action and in the cases of auto-immune diseases you can relapse because of stress: https://www.everydayhealth.com/hs/living-better-with-ms-guide/triggers-that-can-cause-ms-flares. then, you have under the human rights act the right to take further action. https://www.equalityhumanrights.com/en/advice-and-guidance/what-direct-and-indirect-discrimination

Flawed System

The PIP system is flawed, it employs people who are not qualified in the field of the illness (one needs to be a specialist in the field and should undergo years of training as well as qualifications to determine what the claimant is suffering from). The system is designed to degrade people and to make them unwell. The more people that become unwell the more money Big Pharma makes and that is how the world goes round.

Making a Complaint

Do exhaust all avenues of complaint procedures before contacting the ombudsman and do collate as much evidence as you can. If you have a blog or social media page share it with the people I have mentioned in this article. People usually take notice if you have a professional site and you know what you are talking about.

If you want our help and need a letter we can send you a template with all users, names, and addresses and you fill in the blanks. Our template letters are £5.00 and you will get a download link once the payment has been processed, if you want us to write the letter for you it will cost £25 per 1000 words. Your privacy and data will be safeguarded with a non-disclosure agreement.

PIP Mailing Address is:

Personal Independence (2), 2 Mail Handling Site (A), Wolverhampton., WV98 18B

Tel Number:

0800 121 4433 ( be prepared to wait 45 minutes to be put through)

Email:

contactus@capita-pip.co.uk

** Just to explain when I spoke to PIP today over my daughter’s award the woman said that my daughter or I would have to submit evidence by post. Knowing they had an email I said could it not be done electronically (I bit my tongue about saving the environment) and the woman I spoke to blatantly lied and said there is no email address.

The amount of time I had to wait to be put through could easily cause someone who has multiple sclerosis or any other auto-immune disease and suffers from bad stress and anxiety to easily relapse. Furthermore, I do not know who they employ because I had to spell ‘Alemtuzumab‘ out even though I clearly told the woman the word can be found on www.lemtrada.com.

I am not looking forward to the assessment my daughter is due to have because if they make my daughter perform like a circus monkey that will mean I will have to intervene. My daughter documents her health in her online journal on this platform. I am not looking forward to having to deal with these people.

Contact Us For a Template Using The Form Below:

Further Reading

DWP admits wrongly rejecting disabled people for benefits at record rate | The Independent

People who claim PIP or were denied benefit payments could be owed £13,000 due to rule change | The Sun

‘I’ve recently had my PIP benefit claim turned down – how can I appeal it’ – Mirror Online

Thousands of people ‘wrongly’ denied PIP disability payments after surging in DWP appeals – Mirror Online

#dwp #pip #personalindependencepayments #invisibledisabilities #indirectdiscrimination #humanrights #equalityact #ocdandpip #emotionaldistress #humiliation

Definition of Insulting My Intelligence!

July 29, 2022 / / 0 Comments

Definition of Insulting MY Intelligence!

Definition of insult or insulting means: when we give a mock with a scornful countenance as in some smiling sort looking aside or by drawing the lip awry or shrinking up the nose. This may include an assumption that we are more knowledgeable than the person we are talking to, thus proclaiming that the person we are directing the comment to is not of high intellect.

I am rattled today because of an email I received from an agency that is run by my local council and they seem to separate themselves even though they are one. They are basically saying that they are not the local council and are passing the buck.

I am getting irate because this is costing me time having to argue with them and not to mention it is also affecting my daughter’s mental health and it is also affecting me. We both have disabilities and I fight my daughters’ battles even though it sometimes can also affect me too.

“No one can make you feel inferior without your permission.” – Eleanor Roosevelt

“Never argue with stupid people, they will drag you down to their level and then beat you with experience.” – Mark Twain

“Trusting someone’s opinion over your own is admitting you believe they’re smarter than you are.” – Charles Faraone

It takes a lot to get me rattled but people (sheep reading off scripts) do push my buttons and eventually if one does it enough times “you will see me blow”.

I am normally a calm person but if people purposely wind me up and think I am an idiot to believe the BS, they have another thing coming.

Not only this, the said agency is basically insinuating that Multiple Sclerosis is Not a Disability and they are undermining the results by the Professor of Neurology.

“This post serves as the foundation of the whirlwind I will stir and will happily sing like a canary”.

Me, The Singing Canary!

So despite showing evidence that my daughter has had a relapse this said agency is still in need of more evidence. My daughter’s neurologist is on annual leave should I demand he drop his holiday and everything else he is doing to pussyfoot around these people?

I find the behavior of this agency is causing emotional distress and indirectly discriminating which is against the law. If I have proven my daughter has relapsed and needs help getting around occasionally, as no two days are the same, you would think they would be more understanding but they keep putting obstacles in the way and causing distress.

I am dealing with this as I do not want my daughter to relapse again and I will not allow her to jump on one foot whilst touching her nose and act like a performing seal just to prove a point.

I reiterate medical evidence will suffice and she will not be questioned by someone who is not qualified for the role (my daughter’s friend is a PIP assessor with only GCSEs to her name).

Indirect discrimination

Indirect discrimination happens when there is a policy that applies in the same way for everybody but disadvantages a group of people who share a protected characteristic, and you are disadvantaged as part of this group. If this happens, the person or organization applying the policy must show that there is a good reason for it.

A ‘policy’ can include a practice, a rule, or an arrangement.  

It makes no difference whether anyone intended the policy to disadvantage you or not.  

To prove that indirect discrimination is happening or has happened:

  • there must be a policy that an organization is applying equally to everyone (or to everyone in a group that includes you)
  • the policy must disadvantage people with your protected characteristic when compared with people without it
  • you must be able to show that it has disadvantaged you personally or that it will disadvantage you
  • the organization cannot show that there is a good reason for applying the policy despite the level of disadvantage to people with your protected characteristic

If the organization can show there is a good reason for its policy, it is not indirect discrimination. This is known as objective justification.

https://www.equalityhumanrights.com/en/advice-and-guidance/what-direct-and-indirect-discrimination

Note From The Editor.

With this said if an organization treats someone with ‘Multiple Sclerosis’ or any other ‘Invisibile Disability’ the same way you would treat a normal able body person, they are in fact indirectly discriminating, which is against the law.

With Multiple Sclerosis you have good days and you have bad days.

The weather can impact your health.

No two days are the same.

The same can be said with someone with mental health issues, one day you can be somewhat fine and other days you could be not doing so well.

There is no way of measuring or predicting if a person will be ok from one day to the next.

Not only this arguing with people (sheep), causes emotional distress which in the case of ‘Multiple Sclerosis’ can cause a person to relapse.

If this continues I will be looking to seek damages for:

  • Emotional Distress
  • Indirect Discrimination.

#travelcards #multiplesclerosis #indirectdiscrimination #humanrights

What Doctors Won’t Tell You.

July 4, 2022 / / 2 Comments
Big Pharma.

What Doctors Won’t Tell You.

Most of us when we fall ill, trust our local medical practitioners to get the best remedies and advice. However one has to look at the fact that Doctors’ surgeries are small businesses and the revenue they receive, is from the drugs they prescribe, so it would make no sense to send a patient away and to offer holistic medicine. Pharmaceutical companies are not going to allow your doctor to promote alternative medicine for obvious reasons.

https://www.patrickholford.com/advice/how-gps-are-paid-to-prescribe-ineffective-drugs/

https://www.propublica.org/article/doctors-prescribe-more-of-a-drug-if-they-receive-money-from-a-pharma-company-tied-to-it

The pharmaceutical industry totaled 1.27 trillion US Dollars in 2020 and is responsible for the research, development, production, and distribution of medications. The market has experienced significant growth during the past two decades, and pharma revenues worldwide.

https://www.statista.com/topics/1764/global-pharmaceutical-industry/#dossierKeyfigures

https://www.statista.com/statistics/263102/pharmaceutical-market-worldwide-revenue-since-2001/

An alternative would be to try holistic medication and if that did not work then resort to seeing your doctor. Holistic medicine aims to improve health and wellness through the body, mind, and soul. Usually, holistic medicine combines traditional medicine and complementary and alternative medicine (CAM).

(Disclaimer – You must visit your doctor if you have a serious condition and you should not put off something that if caught quickly can be treated. If you are seriously unwell you should visit your local doctor as soon as possible and not delay your recovery by trying to cure it yourself). Holistic medicine is for people like me who have been on medication for 30 years and find it has little benefit so will look for alternative medicine, whilst still continuing to take the prescribed medication, until a cure is found).

https://www.healthline.com/health/holistic-doctor

Note From The Editor

I have recently read that Blueberries have medicinal properties: Blueberries can help heart health, bone strength, skin health, blood pressure, diabetes management, cancer prevention, and mental health.

https://vashiva.com/dr-shiva-live-blueberries-heart-health-does-your-doctor-know/

People who use blood thinners, such as warfarin, should speak to their medical practitioner before increasing their intake of blueberries, as the high vitamin K content can affect blood clotting.

I am all for improving mental health and when I have been prescribed medication for the last 30 years that has little to no effect I have to look at alternative solutions. I am definitely going to include blueberries in my diet from now on: https://www.medicalnewstoday.com/articles/287710

Other Drugs and Multiple Sclerosis.

By coincidence, a drug I have previously written about “Lemtrada Alemtuzumab” for example is an infusion that my daughter is taking this week for the treatment of multiple sclerosis and the cost to the NHS (UK) is $158,000, followed by $60,000 increments for each treatment: https://multiplesclerosis.net/living-with-ms/lemtrada-economics-ms-treatments One needs to read the “Important Safety Information” in the popup of the website to comprehend my concerns in the “Cymru Marketing” article I wrote.

https://www.telegraph.co.uk/news/2016/06/30/individual-nhs-doctors-receiving-100000-per-year-from-drugs-firm/

https://www.abpi.org.uk/reputation/disclosure-uk

https://marketingagency.cymrumarketing.com/2019/10/15/lemtrada-alemtuzumab-sanofi-genzyme/

https://www.gov.uk/drug-safety-update/lemtrada-alemtuzumab-updated-restrictions-and-strengthened-monitoring-requirements-following-review-of-serious-cardiovascular-and-immune-mediated-reactions

Dr.SHIVA Ayyadurai, MIT Ph.D

To learn more about Dr.SHIVA Ayyadurai, MIT Ph.D. – Inventor of Email, Systems Scientist, engineer, educator – presents a CytoSolvert Health visit:

https://vashiva.com/join/

https://vashiva.com/dr-shiva-live-how-pumpkin-seeds-support-cardiovascular-health-a-cytosolve-analysis/

https://vashiva.com/dr-shiva-live-blueberries-heart-health-does-your-doctor-know/

https://vashiva.com/join/#freebook-m

https://truthfreedomhealth.com/

#holisticmedicine #bigpharma #lemtrada #alemtuzumabsafety #doctorpayouts #alternativemedicine #pharmaceuticals

Zena’s Online Journal – Alemtuzumab.

July 4, 2022 / / 2 Comments

Zena’s Online Journal – Alemtuzumab.

Today I started my Alemtuzumab treatment at the Health University Hospital Wales in Cardiff.

It was touch and go last week as I was just getting over my chest infection. I had to have emergency antibiotics to clear the infection before starting my treatment, followed by an x-ray to make sure it was safe to go on to the next phase.

08.00 am

So today is the day and I am having my treatment, I am now hooked up to the infusion drip, I have had steroids, aciclovir, 1 x antihistamine, 1 x antibiotic, 2 x paracetamols, and ibuprofen.

I feel I should have gotten there a little earlier because by the time I had my ECG done this morning I started to get hungry. My mum told me to order a Deliveroo, which I would not do, can you just imagine a pizza delivery rolling up.

Anyway, I have two more days of this so will keep you updated as the days progress.

15.52 pm.

My treatment is over for the day but I have a very high temperature and a really bad headache. They are monitoring me for the next two hours.

I did not bring my Apple watch to monitor my heart rate although it was noted on their machines that my heart rate spiked to 180/60.

I will charge my watch tonight.

I had to share my room with another lady who told me she was only in for the day and was only getting one day of treatment as she suffers from Stiff Person Syndrome. She told me she gave up her career in Law because of her illness.

https://www.ninds.nih.gov/health-information/disorders/stiff-person-syndrome

I won’t post two more separate posts but instead, I will just update a continuation of this one tomorrow.

Update 05/07/22

My temp was a little high 37.6 -37.7 but we came to the conclusion it was probably because I walked in and it’s warm out. The nurse said I had a higher level of glucose in my wee but she said it was probably from my steroids yesterday and told me to avoid eating so much sugar and then lastly I had an elevated CRP level in my blood which can be an indication of infection but because I’m not showing any symptoms of infection, they’ve decided to continue with the treatment.

I’m on steroids as we speak. The doctor from yesterday annoyed me, he just stares and lingers and then comes over and tells me about my blood and asks to listen to my chest then tells me to breathe in and out, like wtf do you think I normally do? (I get it, he was checking my lungs but what is the point when I had an x-ray to check for a chest infection) Does he not think I breathe on the regular? 🙄

I’ve had my cannula removed, don’t think my vein could handle it any longer because the nurse said she could see it was a bit swollen and I did say it was really tender to touch so she just said she’ll take it out and re-do it.

Update 06/07/22

Today is my last day of treatment and have had the awful doctor again today that does not wear his name badge and only introduces himself as ‘Doctor’ he never takes notes or writes anything down. With a little investigation, I found that all doctors and medical staff have to wear name badges otherwise they could face disciplinary action. Read the NHS Policy below:

HR_150

I should by rights report him and have sneakily taken a photo of him whilst he was not looking. ( I have not published it because of data protection but it is on my phone). He could be a civilian pretending to be a doctor for all I know and it seems weird that he gives off bad vibes, even the patients sharing my room agree with me.

08.13 am

My obs were fine and so is my wee.

Will give a final update once I have left the hospital later today.

13.37 pm

I had to have a second blood test done of the day not sure why.

15.37 pm

I had to have my third blood test because someone lost my second set of blood in transport so I’m not in the best of moods.

16.32 pm

I was finally discharged. I was told that they have marked my blood as urgent and if I do not hear back from them no news is good news so to speak.

I did not have a high-temperature today, but I did have severe heartburn, and everything I drank and ate tasted metal, even the tuna sandwich. I also started to have a headache.

I am glad it’s over, although for the next 3 weeks I have to self-isolate.

I will now just have to wait for my next MRI to see what changes have happened but that won’t be until later this year Sept/Oct time.

Update 07/07/22

Just a quick update the dreaded rash has reared its ugly head it is all over my legs and my arms. I have antihistamines which the hospital gave me but it is not a prevention of getting the rash or a cure it is just a remedy to ease the discomfort. I am going to buy some chamomile lotion which I am surprised the hospital did not give me. I suppose because they did not see a rash at the time I was on the ward I guess they thought I did not need it. I look like I have chicken pox.

08/07/22

LEGS UPPER AND LOWER.
TORSO

How long does it take for your immune system to recover after Lemtrada?

After IV administration, there is rapid and profound lymphopenia that gradually recovers (return of absolute lymphocyte count to the lower limit of normal in 40% of patients at 6 months and in 80% by 12 months).

Is alemtuzumab a chemotherapy?

Alemtuzumab is a type of targeted cancer drug. It’s a treatment for some types of leukaemia and skin lymphoma. And may be used as part of a stem cell transplant.

https://my.clevelandclinic.org/departments/neurological/depts/multiple-sclerosis/ms-approaches/lemtrada-alemtuzumab

https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs/alemtuzumab

#ms #multiplesclerosis #multiplesclerosistreatment #lemtrada #alemtuzumab

Zena’s Online Journal MS Journey

June 27, 2022 / / 0 Comments

Zena’s Online Journal MS Journey

This is my online diary of my health, this is a place I come to release all my frustration and vent. Sometimes you just have to let off steam…

As most of my family, friends, and followers already know I am about to start treatment with ‘Lemtrada Alemtuzumab’ on the 4th of July. But first I needed to start my listeria diet, which I have.

The amount of stress this is causing me is unreal, not only for the preparation for the treatment but also for life’s hurdles.

Today I am up at the hospital to have my blood and collect a prescription that should have been ready for me to collect but I have to waste one and half hours waiting for it to be prepared.

I have previously done work experience whilst I was in the sixth form at this hospital and have been shown how the medicines are dispensed. Basically, someone types something into the computer, and a revolutionary machine sorts it out, dispenses it, and then all the pharmacists do is stick a sticker on it, it’s that quick, so I do not understand the hold-up.

STRESS

https://pubmed.ncbi.nlm.nih.gov/16900760/

But my stress is a build-up of other events that are going on in my life. For example ‘Transport For Wales’ are constantly on my case going on that they have not received my new PIP award. PIP is so backlogged that they keep reviewing every 3 months without actually awarding anyone and it is just a waiting game. When I first applied I was told by (TFW) that I was not disabled enough to qualify for a bus pass but that was overturned as I had a (PIP) award.

“I have relapsed and am due to start treatment on 4th July 2022 and if that is not proof I have a progressive disease, I do not know what is? I am not going to jump through hoops for no -one, just to justify that I am disabled. My letter from the hospital should be evidence enough”!

My mother who is my carer has reached out to the ‘Transport For Wales’ (TFW) Agency and it seems it goes over their heads even going as far as saying that they have not received anything from me or from her. My mother actually wrote an article regarding bus passes and is waiting on an update. https://disabledentrepreneur.uk/bus-passes-for-the-disabled/

The stress this is causing me is unbelievable. It does not stop there, a few years ago I had my bloods taken at the same hospital that I visited today and one of the nurses butchered my vein, a few years later I think I had the same woman because my arm is in so much pain.

MY HEALTH

Like I said it is one obstacle after another. I am on my third week of coughing as I have a viral infection but have been told by the Neurologist and the MS Team that I need to get rid of my cough before starting my treatment, otherwise, it won’t go ahead, I was told by the MS Team to start antibiotics prescribed by my GP last week.

In order to get a consultation with a GP, I had to phone the doctor’s practice and was told by the receptionist my matter was not an emergency and to phone back, the following day on a first come first seen basis. (Excuse me but since when are receptionists qualified to make those decisions)?

I phoned back again the same day and this time I said the consultant at the hospital insisted it was urgent to which I was told by the receptionist a doctor would phone me. (This could have been done and dusted on my first call but it is what it is and is done now).

I waited all afternoon and finally spoke with the head doctor at the practice (Dr.C) who had a tone on her like I was inconveniencing her. (Sorry is there something more important that you could be doing, rather than dealing with me)?

So all in all I am not coping well, especially with people who are ignorant or simply do not care.

#multiplesclerosis #ms #neurology #nhs #gp #tfw #onlinejournal #zenasonlinejournal

Bus Passes For The Disabled.

June 21, 2022 / / 2 Comments

Bus Passes For The Disabled.

You can apply for a disabled person’s bus pass or rail card if you have an illness and you cannot manage to walk long distances.

People with, mental, physical, and learning disabilities are entitled to apply.

The criteria are that you have to be receiving personal independence payments or a disability living allowance.

You or someone else can apply on your behalf, such as a friend, family member, or carer.

Once approved you will be able to travel for free by bus or get 30% off your train tickets.

Most applications are through your local council as they are the ones that are in charge of public (bus) transport.

Alternatively, you can contact your local Citizens Advice which can help you with the application if you need it. 

Applying for a railcard

You need to use this link to Find out if you’re eligible and how to apply on the National Rail website. Unfortunately, if you do not qualify, you will have to pay the full price for your train tickets. If your application gets rejected you cannot appeal.

Applying for a disabled person’s bus pass 

Criteria:

  • you are blind or partially sighted, deaf, or unable to speak.
  • you cannot walk very far because of a disability, illness, or injuries, such as multiple sclerosis or autoimmune disorder, or a mental illness.
  • you are immobilized you do not have arms or legs.
  • you have a severe learning disability.
  • you’ve been refused a driving license because of your health (but not because of problems with drugs or alcohol). (Although drug addiction and alcoholism is also an illness).

To know if you are entitled to a free bus pass visit the Government website on GOV.UK and see what evidence you’ll need to show if you are eligible.

If you live in London

You’ll need to apply for a ‘Disabled Person’s Freedom Pass’ instead. The eligibility criteria are the same as for the rest of England.

Follow the steps on GOV.UK to apply.

If you don’t qualify for a Disabled Person’s Freedom Pass, you can ask your council for a ‘discretionary bus pass’. Some London councils give these to people who aren’t eligible for a Freedom Pass but have problems getting around.

You might be able to use Dial-a-ride – a free door-to-door bus service run by Transport for London (TfL). You can become a member if you have a long-term disability or if you’re over 85 years old.

You can find out more about Dial-a-ride on the TfL website.

If you are refused a bus pass.

You can appeal to your council if your bus pass application was refused. Check your council’s website to find out how to appeal.

You can also visit your nearest Citizens Advice – an adviser will discuss your options.

Other help you can get.

If you are on a higher disability rate you may also be able to apply for a car, mobility scooter, or powered wheelchair.

If you’re eligible for a bus or rail pass, you might also be able to get:

It’s also worth checking you’re getting all the benefits you’re entitled to – you can use our benefits checker to easily find out.

Final Thoughts From The Editor

Remember you should get what you are entitled to and councils will not make it easy for you otherwise everyone would be doing it.

You have to stand up for your rights or have someone that can appeal on your behalf.

With this said my daughter who has multiple sclerosis and has relapsed, thus is starting her round of treatment of Lemtrada Alemtuzamab on the 4th of July 2022 and finds it hard to walk long distances is in receipt of Personal Independence Payments. Her review for PIP has been postponed and keeps being postponed every 3 months. I am my daughter’s carer and find that this is causing unnecessary stress for my daughter and I have cited that stress can cause people with multiple sclerosis to relapse.

I will come back with an update once I hear back from our local council regarding my daughter’s bus pass. I am finding organizations from Blue Chip Companies to Government Offices either are not fully trained when it comes to the consequences of their actions. A person who is relapsing does not want added stress to further make their illness any worse and God forbid become bedridden.

I have been on the Cardiff Council Travel Website: https://portal.tfw.wales/en/disabled There is no page that says for customers to appeal. I then proceeded to by phoning them and completely forgot the question I needed for this site (cognitive impairment) 🤣😂 although went on to mention my daughter and the woman I spoke to said that nothing was received from my daughter. She also said it is the council’s decision and not theirs, excuse me you are an agency part of the council.

Cardiff Council email address: travelcards@tfw.wales

Cardiff Council phone number: 03003 034 240 Monday to Friday: 09:00 – 17:00

Evidence shows that stress can be a contributing factor to causing relapses in Multiple Sclerosis patients, which can have a bidirectional relationship.

UPDATE 05/07/22

Email Received 05/07/22

Email Content.

Hope you are well.  

I regret to inform you that unfortunately, your daughter does not qualify for the Disabled Concessionary Bus Pass. As an organization, we are only able to approve applicants that score the points specified below on one or more of the following descriptors.  

Department for Work and Pensions (DWP) Personal Independence Payment (PIP) Statement of Entitlement, which shows: Department for Work and Pensions (DWP) Disability Living Allowance (DLA) award letter, which gives details of a Higher Rate Mobility Component (HRMC) award.

8 or more points under Descriptor 7 “Communicating Verbally”; or
12 points under Descriptor 11 “Planning and Following a Journey”; or
8 or more points under Descriptor 12 “Moving Around”.

Please note:  The PIP descriptors and their individual scores MUST NOT be added together. Unfortunately, as an organization, we are unable to carry out individual assessments, however, in this instance, I would recommend getting in touch with your local authority, who will be able to carry out an assessment to clarify if she is eligible for the pass.

Cardiff Council.
County Hall,
Atlantic Wharf,
Cardiff,
CF10 4UW.
Tel – 02920 872087 

Hopefully, this gives some reassurance that there are options that you are able to explore

Kind regards

Leila Rad-Andrews

My Comments.

The above email is inaccurate because the last time my daughter had an assessment was in 2018 and since then she has lapsed twice. My daughter has since done an online assessment test which states she has between 15 & 19 points.

Despite sending in multiple emails including my daughter’s PIP award they have had the audacity to decline my daughter a bus pass.

She is currently in hospital having Lemtrada Alemtuzumab treatment for her Multiple Sclerosis as she has relapsed and this is causing her unnecessary emotional distress which could lead to further relapses.

https://www.everydayhealth.com/hs/living-better-with-ms-guide/triggers-that-can-cause-ms-flares/

https://disabledentrepreneur.uk/zenas-online-journal-alemtuzumab/

“If it is found that my daughter relapses again because of the stress this is causing her, somebody should be held responsible”.

Update 07/07/22

As my daughter’s carer, I am shocked at how I have been given the runaround. Transport for Wales wrote to both my daughter and me in an email stating that she was not entitled to a bus pass because she did not have enough points.

I explained since the last assessment she has since relapsed and just come out of hospital for her treatment yesterday. So any changes will not be reflected. It is as if the arse does not know what the elbow is doing because when I phoned the number that ‘Transport For Wales’ gave me (which was the switchboard for Cardiff City Council) I was then re-directed back to ‘Transport For Wales’ who told me it was Cardiff City Council Hub-Team that I needed to speak to. I then phoned the number again and was told I had to phone 02920871071 which I did, who then told me I had to speak with the Library. I spoke with the hub/library two days ago and I was sent out an application form even though my daughter already filled one in?

We have submitted all the relevant information by email and we are simply getting the runaround. I finally got an email address advicehub@cardiff.gov.uk yet the hub two days ago said they do not have email addresses, yet today the number I phoned told me to go to the library (as if I am going to shut down my business to take time out is hilarious and beyond unbelievable 😂🤣)… and miraculously they found an email address 😂🤣.

According to ‘Transport For Wales’, my daughter is ‘NOT DISABLED ENOUGH’ to be entitled to a bus pass, even though she has ‘MULTIPLE SCLEROSIS’ and has relapsed.

My Daughters’ PIP Test States She Has 15 -19 Points: https://disabledentrepreneur.uk/zenas-pip-self-test/ contrary to her last assessment that was done a few years ago and since then she has relapsed twice and has just finished treatment. https://disabledentrepreneur.uk/zenas-online-journal-alemtuzumab/

I said in mid-flow of the conversation that this is to do with Government purse strings and the guy I spoke to had not got a clue what I was talking about (I have no words 😂🤣 ).

The criteria are as follows:

(One needs twelve points to qualify).

What the points criteria do not mention is:

(Conveniently)…

Do you experience:

  • Stress
  • Anxiety
  • Depression
  • Suicidal Thoughts
  • Intrusive Thoughts
  • Cognitive Impairment
  • Loss of Balance
  • Insomnia
  • Experience Pain
  • Numbness
  • Experience Light Headiness
  • Confusion
  • Lack of Concentration
  • Social Disconnection
  • Forgetfulness

I will update you once again once I get a response from the Advice Hub.

“I dread to think about what the stress could potentially do to someone with progressive autoimmune disease”.

I could feel myself blowing a gasket never mind someone with multiple sclerosis who has literally come out of hospital for treatment because of a relapse.

If you have any questions or need to be steered in the right direction do drop us a line using the form below:

#disabilitybuspass #discretionerybuspass #freebuspass #buspass #mobility #transportforwales #multiplesclerosisstress #multiplesclerosis #MS #multiplesclerosisresplapse

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