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Category: MS

Personal Independence Payment (PIP) Telephone Assessment

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

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

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

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

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

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