Acute shortage of MS Specialist Nurses prompts funding drive

Most people living with MS in the UK live in areas where there aren’t enough MS nurses to provide vital care and support, according to a new report.  The report published last week by the MS Trust shows that 64% of people (around 68,000) are in that situation.

Now, the trust is launching a campaign to fund new nurses in the areas of greatest need and to make sure no one has to manage MS alone.

On its website, the MS Trust says:

ms-trust-logoMS Specialist Nursing in the UK 2016 finds that there are worrying variations in support across the UK. Almost one in four people with MS lives in areas where the nurses have to care for twice the recommended numbers. But not having the right care and support when they need it can have serious consequences for the health of people with MS, and can be costly for the NHS.

MS Trust research has shown that MS nurses are absolutely crucial for the health and wellbeing of people with MS. They often work with people from the moment of diagnosis, throughout their lives with MS, providing expert information and support in making choices, particularly about their health and treatment.

“At the MS Trust we believe that MS nurses play a vital role in helping people deal with the shock of diagnosis and can help them adjust to, and manage, life with MS,” said Amy Bowen, Director of Service Development at the MS Trust.

“Our research shows that too many people are going without this specialist support – either they have no MS nurse near them, or their nurse is having to manage a caseload far in excess of the recommended sustainable number. This can have grave consequences for people with MS. They may have to rely on non-specialist support for what is a highly complex disease. And they may have to resort to using A&E services if their symptoms become worse.

“As we know, the NHS is coming under increasing strain, and MS specialist services are often not a priority. That’s why the MS Trust is stepping up to the plate with our #No1alone campaign. We have mapped services across the UK and highlighted the areas in greatest need. Now we are determined to fund, train and support new MS nurses to make a difference for thousands of people living with MS today.”

This campaign certainly deserves to succeed to ensure that everyone with MS has access to an MS Specialist Nurse, wherever they live.


new strap


Getting to see neurologist proves not so simple

Ysbyty Gwynedd (Gwynedd Hospital), Bangor, North Wales. Place of my MS diagnosis and later consultations with MS nurse.

Ysbyty Gwynedd (Gwynedd Hospital), Bangor, North Wales. Place of my MS diagnosis and later consultations with MS specialist nurse.

Three or so years ago, I was sitting in a North Wales regional meeting of the UK’s MS Society and distinctly remember a society staffer saying that everyone with multiple sclerosis had a right to see a neurologist. If we wanted to see one, we only had to ask.

Well, in my case, I had not seen a neurologist for years having been transferred from him to seeing a specialist MS Nurse, had only ever had one MRI scan and that was prior to diagnosis in 2002, and had only ever been told that my MS was ‘benign’. In fact, at diagnosis the neurologist said that he did not expect my condition to deteriorate any faster in the future than it had in the previous 25+ years.

If I wanted to see him again, just tell the MS Nurse, I was told.

As is MS’s way, it did get worse and three years ago I was seeing the North Wales MS nurse every six months. So, on my next visit to him, I asked to see a neurologist. His reply was to ask me what good I thought it would do.

My reply was that I’d like to know exactly what type of MS I had and to discuss any medications he might think should be prescribed for me. The nurse’s reply let me speechless, not something for which I am known. He said that I had had RRMS but now had moved on to SPMS and that it was unnecessary for me to see a neurologist as there was no medication suitable for me.

Let me remind you this was a nurse, albeit a Specialist MS nurse, telling me what sort of MS he thought I had – without any further tests. It was just his opinion, and he blocked me from seeing a specialist doctor. Fortunately, this particular man has moved on now and North Wales has a new MS nurse.

Having moved from the UK to Spain, I now have to ask my new GP to refer me to a neurologist here. Maybe, I’ll now get a second MRI – 14 years after my previous one – and even find out exactly what type of MS I have.

Watch this space for further information.