Jess and Neil's story

Jess tells the MS Trust about her husband, Neil, and how she believes an Advanced MS Champion in her area would support her with Neil's advanced MS.

Neil has had severe MS symptoms since after we got married, around twelve years ago. He is forty-three years old and is no longer able to do simple things. Even talking and eating is becoming a big struggle.

We live in the North East of Scotland and had never heard of an Advanced MS Champion before this appeal. Neil currently receives care at home from the Lossiemouth community nursing team and I cannot fault one thing they do to help Neil. Any problem I have I am phoned back to discuss, or they will come straight over to see Neil if we think it is urgent.

One time, Neil had an appointment in Aberdeen to see a specialist doctor, and Aberdeen is a two-hour drive away from our home. The morning of the appointment Neil was feeling unwell but insisted that we still go. As we sat in Aberdeen speaking to the consultant, Neil’s breathing started to become irregular, and the doctor suggested I take him straight home to a local doctor as he obviously was not feeling right. He simply sent us on our way knowing I had to drive two hours home with him. Coming as advice from a doctor I just got on with it and headed home, but about twenty minutes into the journey I noticed Neil was becoming very unresponsive.

As well as having advanced MS, Neil is also type 1 diabetic. I immediately started panicking and I did not know what to do; should I keep driving? I do not like driving in the city, so it was my worst nightmare to even contemplate taking him to A & E back in Aberdeen - especially as we live so far away. I dialled our community nurses and spoke to a nurse who knew Neil well. She talked to me all the way to a nearby hospital so we could get Neil an ambulance back home. I was so thankful for their calming help that day, she really got me through that awful experience.

Neil had suffered a complication with diabetes that can occur when you go through spells of having an infection. This was our first experience of this, and Neil ended up in an intensive care ward. Thankfully, by morning, Neil’s blood was flushed through, and he was allowed home a few days later. The support of an Advanced MS Champion could have been crucial at this point, as they may have had more specialist knowledge about managing his diabetes alongside his advanced MS.

I also find that every time Neil has been admitted to hospital, I have never been happy with the care he receives, as Neil cannot do anything for himself. Last time he was admitted for IV antibiotics for an infection, it was during Covid and I remember being in A & E with Neil for hours before he was situated in his bed space. The following day I went to see Neil and realised he had not been getting the amount of juice he would drink at home, which is quite a few litres a day. Neil was also trying to tell the nurses he did not like the porridge, as they often put salt in it for the older people. They could not understand what he was trying to tell them. During all Neil’s stays in hospital, he never gets access. Nurses are always looking for hoist and slings and as Neil is 6ft 3 he often does not fit these portable hoists very well. We also have a strict toilet routine at home which goes out the window in hospital as they do not have the time of facilities to accommodate that.

Neil does not want to go to hospital again. If Neil had access to an Advanced MS Champion, they could help me navigate his care at home and during hospital visits. They could also ask the right questions or for the right support. They could provide me with more support with services.

Neil’s MS nurse is wonderful and, although we do not see very much of her, she is always at the end of the phone. The MS nurse has helped us discuss things like medication, the suprapubic catheter, the baclofen pump, peristeen anal irrigation. All the big changes Neil has had to make because of his MS to control his symptoms and live comfortably have all been suggested by our MS nurse. As amazing as she is, however, I know our MS nurse for Moray has over 500 people to see from newly diagnosed to advanced MS and you can imagine that has to be a massive stress as there is only one person in this job.

I think an Advanced MS champion would be beneficial in my area (Moray, Scotland) and other areas across the UK. The number of people in my area who have MS is very high and, I am unsure of the amount of people with advanced MS, but I certainly know for us there is no support specifically for advanced MS in the area. People should be able to get the proper support they need. We are lucky in the sense that I am here for Neil and I am very capable of advocating on Neil’s behalf. I am sure that is not always a common thing for people with such advanced illnesses.

People should support the Advanced MS Champions program because I know that if I had MS and not Neil, he would be needing a lot more support and help than I do - and the help of an Advanced MS Champions would be so beneficial. I see this first-hand as my father-in-law has had to start looking after my mother-in-law at home on palliative care and three weeks in, he is not coping. But he has been thrown in at the deep end. I have been helping and assisting Neil for the last 15 years, so it is normal life for me, and we just get over the next obstacle that is thrown at us as it comes.

Neil was supposed to get a place one day a week at the Oaks in Elgin before Covid hit, now we are still waiting for that to happen. He was looking forward to it and has only just come round to the idea of going out for one day a week, I really hope it starts up again soon it will do us both good.

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