The Struggle for MS Support

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The Struggle for Support: Cardiff NHS and the Neglected Calls for Multiple Sclerosis Patients

Living with Multiple Sclerosis (MS) is challenging enough without having to navigate a healthcare system that seems unresponsive and neglectful. Unfortunately, this appears to be the experience of some MS patients in Cardiff, where reports suggest, limited or a lack of support from the National Health Service (NHS). The failure to answer calls, initiate callbacks, and respond to emails raises serious concerns about the quality of care and support for individuals facing the complexities of MS.

Patients should have an emergency number they should be able to call or chat (chat should be with a human) where there is an MS nurse on standby. There should also be a link to frequently asked questions and a resources page, describing in-depth what a patient should do if they believe they are relapsing. There should be an email autoresponder to reassure patients that they will be dealt with promptly.

The Impact of MS Relapses:

For those living with MS, relapses are a common occurrence, marked by the sudden onset or worsening of symptoms. These relapses can be frightening and debilitating, requiring prompt attention and intervention from healthcare professionals. The reported lack of support exacerbates the challenges that MS patients already face, potentially leading to delayed treatment and prolonged suffering.

What to Do If You Suspect an MS Relapse:

1. Document Your Symptoms: Keep a detailed record of your symptoms, noting their onset, duration, and severity. This information can be crucial when communicating with healthcare providers.
2. Contact Your Neurologist or MS Nurse: If you suspect you are experiencing an MS relapse, reach out to your neurologist or MS nurse as soon as possible. Provide them with documented information about your symptoms and emphasize the urgency of the situation.
3. Persist with Communication: In cases where calls go unanswered, callbacks are not initiated, or emails remain unresponded to, persist with your attempts to communicate. Escalate your concerns to higher levels of authority within the healthcare system if necessary.
4. Seek Alternative Channels: Explore alternative channels of communication, such as contacting your GP or visiting urgent care if the situation warrants immediate attention. Advocate for yourself and make it clear that you need prompt assistance.
5. Engage Patient Advocacy Groups: Connect with MS patient advocacy groups that may have resources and guidance for navigating healthcare challenges. They can offer support, share experiences, and potentially assist in resolving communication issues with healthcare providers.

Accountability and Advocacy:

The reported lack of support for MS patients is a matter of great concern, raising questions about accountability within the healthcare system. Patients have a right to timely and responsive care, especially when dealing with conditions as complex as MS.

1. Raise Official Complaints: If you have experienced difficulties in obtaining support, consider raising an official complaint with the healthcare provider. This can help bring attention to systemic issues and contribute to improvements in the delivery of care.
2. Contact Health Ombudsman: If your concerns are not adequately addressed, you have the option to contact the Health Ombudsman. They can independently investigate complaints about public services, including those related to healthcare.
3. Advocate for Systemic Change: Collaborate with patient advocacy groups and engage in efforts to bring about systemic change. Advocate for increased resources, better training for healthcare staff, and improved communication processes within the NHS.

Conclusion:

Living with Multiple Sclerosis is undoubtedly challenging, and patients rely on a responsive and supportive healthcare system to manage their condition effectively. The reported lack of support for MS patients is a cause for serious concern. Individuals need to advocate for themselves, document their experiences, and engage with advocacy groups to bring attention to systemic issues that may be compromising the quality of care. Accountability within the healthcare system is crucial to ensuring that MS patients receive the timely and effective support they need.

It used to be that the NHS had a dedicated MS team to answer calls but with all the public spending cuts this has been abolished and according to the MS Cardiff Website MS (Multiple Sclerosis) – Cardiff and Vale University Health Board (nhs.wales) the only way to contact them is as follows:

1. For prescription/MRI inquiries: please ring either Lesley at 029 20748161, Gaynor at 029 21847104, or Hadiza at 029 20745735
2. Day Unit admission or infusions/treatments: please contact our Day Unit on 029 20743280;   
3. Other queries: please ring your Consultant’s Secretary who can either help with your query or speak to one of the Clinical Team:
4. Carole (Dr Tallantyre / Dr Pickersgill) on 029 20745564
5. Relina (Secretary for Professor Robertson) on 029 20745403 (works limited hours and passes you on to other people, as cited by a patient)
6. Kate (Dr Willis) on 029 21847624

Every patient has a consultant and MS team and if the said people are out of the office who do you call?

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** Disclaimer: Since publishing this article on 29th December 2023 there has been an update on the CAVUHB website and they have reinstated the MS Support Team, coincidence or what?

Please search the NHS website or your local hospital for other regions.

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UPDATED CARDIFF MS SUPPORT

If you have a prescription/MRI inquiry, please ring either Lesley at 029 20748161, Gaynor at 029 21847104, or Hadiza (MS Nurse) at 029 20745735

If you have a query relating to Day Unit admission or infusions/treatments, please contact our Day Unit on 029 20743280;   

If you have any other queries, please ring your Consultant’s Secretary who can either help with your query or speak to one of the Clinical Team:

• Carole (Dr Tallantyre / Dr Pickersgill) on 029 20745564
• Relina (Professor Robertson) on 029 20745403
•  Kate (Dr Willis) on 029 21847624

Citation: https://cavuhb.nhs.wales/our-services/ms-multiple-sclerosis/

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Note From The Editor:

In my opinion, they should have an autoresponder email message telling you what to do if they are out of the office. Simply stonewalling does nothing for someone’s mental health. https://disabledentrepreneur.uk/what-if-your-gp-stonewalls-you/ They should have someone to answer calls 24/7 who could be on standby and pay the person by the length of time the call takes to get resolved. A patient who worries is at risk of having an MS relapse from stress. There should be someone on call even through the holidays, yet this was not the case when we tried reaching out today.

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#multiplesclerosis #ms #msrelapse #neurologist #msteam #cardiffnhs #nhs #cav #uhw ##mssupport #msteam #autoimmune #autoimmunedisorder

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