People with MS denied vital support

Please note: The current Coronavirus Covid-19 pandemic is fast moving, and reactions to it seem to update not just day-by-day but minute-by-minute. Obviously, this site was not designed to bring you the very latest developments in a ‘breaking news’ story such as this. Instead, this site will continue to include news and opinions relating to major events, policy changes, and so on.

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Two top MS charities have jointly surveyed health professional and found new evidence showing that people with MS are being denied vital support because of the impact of COVID-19 on essential rehabilitation services.

These organisations, the MS Society and MS Trust, were looking at services in the UK,  but I am sure that similar situations exist in many countries worldwide. In fact, I can talk from personal experience.

Here, in Spain, last November my neurologist recommended that I be assessed for physiotherapy, occupational therapy, and regular homecare visits. However, before those assessments could take place, the COVID-19 coronavirus had arrived and the country was quickly locked down.

The lockdown and other restrictions have been eased significantly in the last few  weeks – too soon in my opinion – but I fully expect my assessments not to take place until next year.

Unable to meet patients’ needs

Back in the UK, the two charities surveyed healthcare professionals and found that seven in ten (70%) believe the MS service they work in, or with, is not currently able to meet patients’ needs to the extent it was pre-pandemic. No surprise there but it is good to see some degree of measurement.

The survey found that nearly three quarters (73%) think neurological rehabilitation services have been hit by the pandemic, with appointments having been either limited, delayed or cancelled. And 76% of those surveyed said resuming these vital services back to pre-COVID-19 capacity must be a priority. You can read thee report in full  HERE.

Data from the UK MS Register also shows around a third of people with MS have been struggling to stay physically active during the pandemic, with many people shielding.

According to the MS Society, Behnaz, who has relapsing MS and lives in London, said: “Overnight I’d gone from being such an active person to only being able to walk the dog once a morning. I did get a virtual physiotherapy appointment in April, but after just two sessions – in which we didn’t talk about the help I needed for my weak left leg or right hand – I was told I needed to be referred to somebody else, and I haven’t heard anything since.

“I really don’t want to lose my abilities as keeping mobile means absolutely everything to me…being so inactive has had a huge impact on my mental health – I could really just do with some expert help.”

Calling for change in the NHS

ms society

Fredi Cavander-Attwood, MS Society.

, MS Society’s policy manager, said: “Many people with MS rely on rehabilitation to manage their chronic symptoms, stay active and maintain their independence.

“Such services, especially face-to-face care, have understandably been limited or cancelled to protect people and free up NHS (National Health Service) capacity during the pandemic. But the needs of people with MS have not disappeared and we fear the long-term impact on their health and well-being.

“The NHS needs to show the same leadership it has with cancer and fertility services, by helping local services and professionals overcome the challenges they face in safely resuming these vital therapies. The government must also ensure, when planning for a second wave of the pandemic, that it factors in protection for essential rehabilitation services.”2

ms trust

Megan Roberts MS Trust.

Megan Roberts, MS Trust’s head of health professionals Programmes, said:  “We’re hearing first-hand from people with MS who feel that their health and well-being has deteriorated during the pandemic because they have been unable to access the life-changing rehabilitation services they rely on.

“Healthcare professionals are going above and beyond to support people with MS in these uncertain times, but they are facing huge challenges to meet the needs of the MS community and get services back to pre-Covid capacity. We stand with the MS Society in urging the NHS to address the current gaps in treatment, care and support and ensure nobody is left to face MS alone.”

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Spelling

Please note that being born in the UK, all my posts, are written using British English spelling.

For example:

Centre      not center (except in names, Centers of Disease Control)    Colour                               not color                                                                                     Diarrhoea                       not diarrhea                                                      Haematology                not hematology                                                                          Haematopoietic          not hematopoietic

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50shadesofsun.com is the personal website of Ian Franks. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. More recently, he was a freelance medical writer and editor for various health information sites. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. Ian is not a doctor, so cannot and does not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely his own unless otherwise stated.

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