I came to terms with the fact that there’s no cure and no treatment, and that there’s also no support.
I have PIP, an occupational pension and my old age pension, so I realise how lucky I am in that I don’t have to contend with being poor as well as disabled
I’ve been means tested and paid for my home to be adapted, I’ve bought my own attendant push and powered wheelchairs. I pay the full cost of carers.
I’m getting worse.
It’s two and a half years since my last annual review with a neurologist. I’ve never seen a MS nurse.
I pay to see a Neuro specialist physiotherapist every three or four weeks. I’m pretty much housebound now.
I just feel like I’ve been written off, and I’m struggling to accept that.
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Hello Flowerpot,
Unfortunately your post reflects how things are for me too. Pensioner, with occupational pension, old, disabled and now also widowed. I’ve also paid for all my home adaptations and electric wheelchairs etc.
Now my house is really unsuitable for me and I need to move to a bungalow as I can’t remember the last time I was able to access the upstairs of my house.
I feel abandoned by the NHS and haven’t had access to a neurologist since 2010/2011 and I don’t have access to an MS nurse either, plus I’ve never been offered any DMDs - they just view me as a lost cause. I do have a really lovely GP, but he said he doesn’t know much about MS and the symptoms I present with have no cure. It’s all so very disheartening, but I live everyday as it comes and that’s the best I or anyone can do.
What I’m trying to say is that you are not on your own with these feelings, but I wish it was different for the two of us and for all those in the same position as we are.
Take care,
Mary x
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Thanks Mary. I don’t often feel sorry for myself. I’m fortunate in that I feel well and I’m not in pain. My husband has been diagnosed with Alzheimer’s so we’ve not much to look forward to.
I’ve lived by the mantra “try not to worry too much about what might happen because it might not”
Of course worrying, fretting and crying about it won’t help it or make it any easier to deal with.
I feel better having shared my thoughts.
I wish things were better for you too.
If only!
Eve x
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Hi Flowerpot
I’m sorry to hear this but I think there are an awful lot of us in the same boat, paying for adaptationsl carers etc and being left to our own devices to get on with it.
Its so sad but time goes on and no appointments happening, it is as you say, just left to get on with it.
I hope things improve for you and everyone else.
Pam x
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Easy to say but I don’t understand how you’ve allowed yourself to be abandoned by the NHS, or more to the point, that they might somehow feel entitled to have abandoned you.
You can demand an appointment, get yourself back into the system and if that fails, invoke the PALS (Patient Advice and Liaison Service) at the NHS Trust who is supposed to be looking after you. The MS Team there is obliged to support you all the way through to advanced and palliative care if necessary.
Besides that, surround yourself with good people. Old friends and a local MS group. My local group disbanded so I joined the adjacent one. Human contact is SO important.
Graeme
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Thanks Graeme. Apparently I am still in the system, on a waiting list to see my famously abrupt neurologist. He’s very knowledgeable but doesn’t seem to like people much! In 19 years I’ve seen four different ones before ending up back with the one I started with. Two of them were MS Specialists and although they’d nothing to offer me at least they talked to me, listened to me and answered my questions.
As for the MS Society local branch it collapsed about three years ago due to the dwindling number of volunteers, and the lack of support for those volunteers from national and regional officers.
It’s about to be relaunched, but as my husband has Alzheimer’s and neither of us drive now, we’re pretty much housebound.
We’ve no family. Friends are helpful but I don’t like bothering them too often.
Eve
Your lucky your not in pain. i live with it.
I contacted the ADULT SOCIAL SERVICES, you should have one in every area, and they did a care plan and put things into place for me. I get care twice a day. They then contacted my local wheelchair services and i was assessed for one and i got one. It took over six months, but i now have an amazing power chair which i can take out and go into local town with my carer.
i see my MS NURSE SPECIALIST about every 3 to 4 months. no point in seeing a neurologist as well there is nothing left to do for me, i am what they term just being kept comfortable. I still suffer with UTI and bowel problems. if i think i have a UTI my surgery are brilliant, just have to send in a sample (they supply me with bottles, and then if i have one i get a prescription. actually by doing this they found i had a very rare Pseudomonas aquaria’s UTI which is a rare bacteria from water and is quite resistant to antibiotics. i was lucky and got through it.
i think as Graeme is saying we have to push for our help, i do and i have to say i cant complain about my treatment.
I just feel so ill now and this hour back seems to have had a bad effect on me.
DONT give up ring adult social services and get help.
HUGS. xxxxxxxxxxxx
outside our local coop in my lovely powerchair.
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Thank you. I have been assessed by adult social services. They in turn had me assessed by community OT and physio. Back then they provided bed handle, crutches (I can’t walk now but could then) and a perching stool. They told me I needed a wet room and ramp to the front door. I was means tested and told I would have to pay for it in full.
A more recent assessment got me twice daily visits, morning and evening. Again I was means tested and told I would have to pay in full. The agency Social Services appointed was not satisfactory and is the subject of a formal complaint for the following.
- Erratic timing of visits. Morning between 0730 and 1030
- Arriving up to 45 minutes late. I’m not unreasonable I do know it can be unavoidable, but it was too often and also when it was the carers first call of the day.
- Leaving early to catch up because they were running late.
- Sending a male carer when I specified female only for help with personal care
- Charging me in full for drastically reduced visits. One carer spent just eight minutes on one occasion for an hours call, on another sixteen minutes.
- Charging me for a refused visit even though they were unable to provide a female as agreed.
- An assertion that social services clients are not important. I was told more than one “I can’t be late for my next client, they’re private.”
- I was always polite and pleasant when contacting the office, I wasn’t always treated with the same respect.
- Emails and messages through the App were not responded to.
In view of this, as I’m paying in full for my care I now source my own care, that way I have more choice and control over what I’m paying for, and it’s working very well.
As I said in my post I’ve never seen an MS nurse, I do have a contact number but they’re busy apparently. If I leave a voicemail I count myself lucky if they return my call. Mostly they don’t, so there’s not much point.
I do have Botox injections for overactive bladder and ICSC. That’s transformed my life.
I’m so sorry you have constant pain, I can’t imagine how awful that must be, but pleased you get the support you need.
Lovely photo.
Eve x
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Hi there…
It sounds like you’ve been carrying a lot on your own, and I just want to acknowledge the resilience and effort it takes to navigate all of this. You’ve been proactive in adapting your home, finding the right equipment, and even self-funding regular specialist care—so much that many would find daunting. It’s completely understandable to feel worn down, especially without regular follow-ups or a dedicated MS nurse in your corner.
Please know that you’re not alone in this, and there are others here who understand the challenges you’re facing. It might be worth pushing again for a review with a neurologist or exploring whether any local support services could step in to fill some of those gaps. Sometimes just finding a bit more connection or a check-in can make a world of difference. You’ve come this far with such strength; you deserve to feel supported in every way possible.
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Hello again Eve
I know it’s an over-simplification, but just because you were seen years ago and got an assessment and some help that was appropriate for the time, that doesn’t mean the assessment stands in perpetuity.
You need to ask Adult Social Care for a new Statutory Assessment. You have MS and it hasn’t stood still. They know MS and they know it doesn’t stand still. Whatever happens thereafter, your formal request will get you back in the system. Thereafter you can ask why the MS Team decided to gaslight you and other intriguing questions.
Good luck and stick to your guns
Graeme
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I was reassessed earlier this year when my husband was diagnosed with dementia, and means tested again.
I am not entitled to any free care, so as I’m funding it myself I can have as much as I feel I need or want.
Eve
Hi I to ha e had to pay for grab rails stairlift etc you work all your life and get penalised for saving I’ve been waiting six and half years to see ms nurse it’s ridiculous
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I first saw a neurologist 2005.
I had a diagnosis 2006.
I’d read on a Forum and in MS Matters about how wonderful ms nurses were.
I’ve never seen one.
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I have primary progressive ms diagnosed 2018 took seven years to diagnose which one have you got if you don’t mind me asking I am new to this forum
No problem. Ask me anything.
Primary Progressive. I was 49 just short of my 50th birthday.
I had symptoms going back several years.
Unexplained falls, fatigue, clumsiness.
Double vision in 2002.
GP didn’t take me seriously until I got dropped foot towards the end of 2004.
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Oh ok you was saying your husband hasn’t been so good either it’s a horrible disease my mum had that I feel for you