De-registered by my MS nurse

Hi apologies in advance for such a long post but just feeling so upset I really need some advice
I need some home adaptations so I was advised to contact my MS nurse, I know I can self refer but was told it carries more weight if supported by a health care professional She messaged back to say if I needed her help I had to be re-referred by my GP
I thought once you had an MS nurse she was there for good
I was told I would have an appointment yearly with an MS Nurse and she was my first contact should I have any MS issues I am not having any DMTs She has never made an appointment for me but she has always returned emails within a couple of days
I have sent her another message to ask her why I need re-refering but I am worried as I think it is personal.
My treatment by Neurology has been terrible, I had been diagnosed 20 years earlier moved from one end of the country to the next and had not had any dealings with Neurology or a consultant in all that time
I became really ill again 3 years ago, Thus began a hidious and long road to get any help at all
Despite having copies of all my MRIs consultant letters from a professor at ST Thomases hospital the Neurologist outright refused to accept I had MS with no further investigations as I had never had any MS lesions in the Brain
I had to complain about the Consultant to pals ( My previous consultant was furious and wrote to them) and kick up a massive fuss endless fights which resulted in him having to give me an MRI The result being 8 new lesions in my spine and a lesion in the pons
I’m afraid I brought down all kinds of hell on both him and the hospital including Legal representation which I didn’t persue as I had a full written apology from both him and the hospital I believe it affected him quite badly and I am also aware that my MS nurse was very fond of him I genuinely thought this nightmare was over!
I did not accept a change of Consultant as primarily there wasn’t one available and he was head of the department plus it’s the same MS nurses for all the consultants I’m now gearing up for another fight If she is unable to give me a suitable explanation as to why I have been de-registered and the whole process of being re-referred is going to take forever Sorry for such a rant but feeling so upset that I’ve had to accept that I need to make adaptations because of progression and just not feeling up to another fight (not to mention that she wouldn’t be remotely aware of the difficulties I’m having ) Thanks everyone feel better already

Given your dreadful experience, have you considered going direct to an Occupational Therapist and cutting out the Nurse? Might help avoid another stressful saga.

“Very often occupational therapists can visit you in your home or workplace and make simple suggestions for changes in lifestyle, or suggest useful equipment and adaptations.”

Occupational therapy (OT) | MS Trust

As per @whammel, you need to contact your Adult Social Care Dept. at your council and ask for the OT’s. Things have changed as some are county councils, some are unitary councils now. If you still have county & district councils, it’s the county council you’d need. The key phrase you must say is that you require a “statutory assessment”. This requires them to come out and visit though they may start with phone calls.

The OT’s are not interested in what illness you have, only in your functional capabilities. One of their primary objectives is to prolong independent living for as long as possible: a stairlift may cost a couple of grand whereas going into a home would cost that much for a couple of weeks, so you get my drift. They will make recommendations but you will also be means tested - it’s not all free, though you may be eligible for a grant to cover some of the costs.

There may be a time delay, for the visit and for funding approval. You can always self-buy. Have a look at Living Made Easy which is a charity run site with non-commercial helpful advice about minor aids and adaptations. If your local authority has signed up for their AskSara product, you can go through guided questions that will point you to the type of products that may be available. Check here to see if they subscribe. If not, try the Shaw Trust AskSARA site.


1 Like

Hi Graeme We self refered about 2 months ago but after repeat enquiry and not really getting anywhere we heard it would be beneficial to get the MS nurse involved Which I wasn’t over keen on This morning however a letter arrived from the OT about arranging a visit TYPICAL! also the MS nurse sent a message to say she was contacting my GP to ask him for a re-referral on my behalf She didn’t answer my querie as to why I had been dropped