Since my diagnosis 15 years ago I’ve always bought my own wheelchairs, with the exception of one for which I got a voucher for £280 towards the cost which I topped up so that it was a bit better than a standard NHS one. I’ve replaced it twice and I just thought maybe I could have another voucher after all this time. The receptionist at the surgery had no idea what I was talking about, nor did her supervisor. Do they not do this any more?
Hello Flowerpot, I think this service should still be running although its a few years since I used it. On Google try looking up NHS Personal Wheelchair Budgets. I think you need to get a referral from your GP to the NHS wheelchair services then you get invited for an assessment. Once this is approved they give you a choice of their wheelchairs or you can get a voucher towards a wheelchair of your choice.
I have an expensive power wheelchair and I think from memory I got around £2000 from them (this was a fraction of its price, but it certainly helped). Being disabled is so expensive. I don’t know which area you live in but you should look up NHS wheelchair services for your area and inform your GP so you can get a referral. I should add it takes forever to get through the process. I was starting to panic waiting as my old wheelchair was on its last legs and I feared total isolation without having a trusty wheelchair.
Good luck and I hope this helps. Mx
Thanks, that’s a great help. In the 15 years since diagnosis and first using a wheelchair part time at first I’ve only had the one part funded by the NHS. I’ve had two attendant push chairs and two self propel, one of which I used the voucher, which if I remember correctly was for £280. The chair cost £350 in 2013. When they’ve needed replacing I’ve done it at my own expense. I’ve also bought a small power chair to use around the house, and a larger one with a bigger range to get me out and about. That one cost over £2,000. I just thought as the attendant push chair is in need of replacement again the NHS might cover it. Given what you’ve said I may as well just replace it at my own expense again. The NHS doesn’t have a bottomless pit of money, nor do I, but I’m lucky having worked and paid into a pension scheme for over 30 years I have a decent pension, so I can afford to do so. However it does sometimes feel that if I’d not bothered to work and save and had drunk, drugged or smoked my way to I’ll health I’d get all the support I need. Yes this disability malarkey is expensive. I’ve paid for all the adaptations to my home and I pay to see a physiotherapist once a fortnight, and in full for my care visits. Savings all gone now! Heigh ho, mustn’t grumble
Hi Flowerpot, Yes know what you mean I’ve spent a small fortune (well a big one actually) over the years adapting my home and like you have worked solidly and got a good pension.
But the savings I have are going down fast because of the excessive costs of being disabled. So I was pleased when wheelchair services helped me, and as you’ve paid in too you should still consider applying.
I’ve was lucky enough to have a good career, but I know many people haven’t been - still we all need help at times.
Hope you get sorted soon. M
I might, but the first and possibly the biggest hurdle is getting past the surgery receptionists. They are very well trained gatekeepers, preventing access to a GP. When I spoke to one on Thursday, having been on hold for 40 minutes told me she didn’t think they did this, and that she’d checked with her supervisor who agreed! I’m not sure I’m up for a fight! Thanks x
amen to that. I had some money left over after sold my home and moved into sheltered. most of it went to my children before i pop my clogs as it was needed. BUT still too much to get help. also in reciept of PIP i have to use my money for care for my care.
I bought a fab electric all terrain wheelchair for about 1,250, aluminium easy to fold. My first manual wheelchair lasted me about 4 years it cost me 50.00.
I did look at the NHS electric they were awful so never bothered. I can afford my own so i buy my own and leave it to others.
BUT yes sometimes i wonder why i bothered working. Oh my god, i got a small pension from a job i worked at 3 years before i got sick. RIGHT, it was worth a whopping 60.00 a quarter for life right. It is TAXABLE so funny. half of it i dont get.
My scooter i paid for too. OT though still adapts if you have savings, AND if you have your internal doors adapted for your use of wheelchair you can apply for council tax refund if your classed as disabled adapted. or whatever they call it lol. and we can claim VAT exempt.
with PIP if we get full enhanced we can get a car also our car tax paid as well.
i have never used mine for that as my husband would deal with cars for us.
Some parallels here! My PIP goes towards my care. In November we got a Motability car, prior to that we bought our own, this has saved us quite a bit. The OT who recommended the conversion of bathroom to wet room and building a ramp at the front door, told me it was means tested and I wouldn’t qualify for help. She said that without knowing anything about my means! However, when I insisted it be done someone from the Disabled Grants Facilities arrived, and she was right, I didn’t qualify. I did qualify for the reduction in council tax though, it’s reduced to a band lower.
My husband was told he could claim Carers Allowance but that too was refused. Apparently he has an underlying entitlement to it but as he’s already in receipt of a government benefit it won’t be paid. When he asked what his government benefit was he was told it’s his Old Age Pension, which begged the question, if it’s a “benefit” why is it taxed? They couldn’t answer that!
i dont understand at all. carers allowance. What is Carer's Allowance? | Independent Age
Money you get from personal or workplace pensions doesn’t count as part of your earnings
The thing about Carers Allowance and State Retirement Pension is that to qualify for Carers, you have to be caring for another person (who gets the higher rate of PIP for Care) for at least 35 hours per week. The idea of CA is that by dint of providing care for someone else, you can’t work full time as well, or earn as much, so the (measly) CA is supposed to replace some of your notional income.
You can’t qualify for SRP and CA together because by definition, you’ve retired in order to get your state pension. Therefore you wouldn’t be working but for your care of another person.
You do retain what’s called ‘underlying entitlement’ to CA. This could increase a means tested benefit (like income support, housing or council tax benefit); assuming you don’t already have too much income or savings to qualify.
My husband was very disgruntled to lose his CA when he reached the age of 65 and began receiving his state pension. After all, he still spent (hundreds of) hours per week looking after me. He threatened to strike! And what would I do with no one to pull up my pants?
(The inhabitants of this house join in your annoyance at having worked and saved, we qualify for very little help! At least there’s Motability - if it weren’t for that we’d be even more cheesed off!)
Indeed! Nothing more to add! xx
The scheme is still going, now called the Personal Wheelchair Budget, as Theorising said. I’ve just ordered my new using the scheme. I don’t know if it varies across the country, but here in Sheffield, you’re entitled to a new one every 5 years. As I was at the end of that term for my old chair, I went to wheelchair services direct, since I’m on their books already. No need for anyone ro refer me (though if I did I’d contact my MS nurse rather than GP)
My budget is about a third less than last time, due to cuts. Thankfully I’ve got the savings to get the chair I want. I’m looking forward to it, as my current one is really showing its age
Thanks. I don’t have an MS nurse, and I’m not sure I’m up for a battle with the GP surgery receptionists, who are very efficient gatekeepers, preventing access to GP’s and fobbing patients off.
My wheelchair services (West Sussex) don’t do the voucher scheme at all anymore! Grrr!!!
It seems that it does vary across the country.
My wheelchair services also come with staff who make comments such as ‘hmm, that chair’s looking a bit snug’. Might as well have said, ‘you’re getting fat!’ I’d like to have answered ‘yes, that’s the problem with not being able to walk; eat more than a lettuce leaf and weight just piles on’. Or, ‘that’s the trouble with MS, it drives me to drink gin and eat crisps!’ But didn’t want to annoy the wheelchair technician who was able to (for example) replace my ‘chair cushion. Grrr (again).
Bloody postcode lottery.
Says it all really! I share your annoyance.
Hi Flowerpot and Ssssue,
Yes the postcode lottery is so frustrating I live in Yorkshire and no longer have either a Neurologist or an MS nurse (York NHS Trust said they didn’t have the finances to keep the service and they were sure I’d understand). I didn’t understand, but it made no difference there is no service. I have to go to my GP practice if I have any symptoms, but they have limited knowledge of MS. So I suffer.
I did get help from NHS wheelchair service (over 4 years ago) and it did help. It was stressful and I got comments from the assessors as they told me to sit up straight as I have tendency is to lean to the right, but I don’t even know I’m doing it! I put up with their remarks and got some financial help by doing so. It wasn’t easy, but I’m used to the negative comments from professionals and take it with a pinch of salt. I can laugh off their ignorance even though sometimes it really hurts.
MS sucks, but it’s part of me and so I have no choice but to live life the best way I can everyday.
The people on this site have given me more help and support than any of the professionals ever have.
Onwards and onwards… Mx
I was interested to see that you’ve found there is no MS nurse service for you at the York NHS Trust. They claim to have one York and Scarborough Teaching Hospitals NHS Foundation Trust - Multiple Sclerosis (MS)
and it all sounds hunky-dory for anyone with MS from that! So maybe a case of don’t believe everything you read!
I’ve recently been referred to that trust so your post caught my eye. I’ve got neurological symptoms as yet undiagnosed on top of a diagnosed neurological condition of over 10 years duration (cervical dystonia) and neurological symptoms going back over 40 years. Newcastle were brilliant for the dystonia (at least at the Walkergate specialist centre) but useless at the RVI when it came to trying to diagnose what is currently going on. So now being seen by York NHS Trust. Have only seen the neurologist once there so far but he was in a different league (better) than the one at the RVI. And better than any I saw in Sheffield.
Lottery seems to be the right word for NHS neurological services that’s for sure.
Hi Ziola, I can’t understand why York are taking on new cases when they sent letters out to older cases saying they didn’t have the finances for this service. I know for certain I was not the only person to receive this letter as other people I know with MS that used York were also in receipt of it. There is no service there for me and I don’t have any access contact for an MS nurse. All I have is my GP practice if anything goes amiss with me.
I feel abandoned by the York NHS Trust.
I do hope though that you get the service that we all should be entitled to. It shouldn’t be a post code lottery, but it is.
Support for people with MS seems to be very variable throughout the country. It does seem very much a postcode lottery, but I think, in general, that MS along with other neurological conditions is very much the poor relation when it comes to funding. It’s not just the postcode though, it’s sometimes the neurologists. The first one I saw was abrupt and seemed disinterested, stressing to me each time I saw him, “there’s no cure and no treatment” I asked my GP who was supportive but acknowledged that he knew little about MS to refer me to an MS specialist, which took me to neurologist number two, it meant a 100 mile round trip, but he did at least listen to me, and answer my questions, I saw an MS nurse, a physiotherapist and an OT there, just once. I then found myself making a 100 mile round trip to be told each time, “I’ve still nothing to offer you”. So I asked my GP to refer me back to my own health authority where I saw number 3, probably the worst of the lot. “I’ll see you once more because I never see a patient only once, then I’ll discharge you because I can’t do anything for you” which he did, so I didn’t see anyone for a few years. I then heard an MS specialist had been appointed, so I asked for a referral to see him. Unfortunately the GP I’d had a good relationship had retired, and the new one showed some reluctance, but did so, and I saw number 4. Another nice chap, a shorter 50 mile round trip but again it felt a reasonably more positive experience. He also told me the headaches I’d endured for decades were migraine! Then he moved away, they weren’t able to replace him, there seems to be a shortage of neurologists, so I found myself back with number 1. He does at least afford me the courtesy of an annual review, my most recent taking place by phone, lasting just three minutes including introduction and goodbye, when he reiterated “there’s no cure and no treatment”. It does keep me in the system, I don’t have a MS nurse but I do have a telephone number for them, it’s always on voicemail, but they don’t always return your call, and I’ve not seen one face to face. The NHS department to have done most for me is Urology. MS having cursed me with an overactive bladder which doesn’t fully empty, I’ve been having Botox injections in that for three or four years now. That has been life changing.
Hi Flowerpot, it sounds as if you’ve had a right old run around. I always get the “there’s no cure and no treatment” too and I just say you’re not telling me anything I don’t already know. I know it’s a nightmare but now help me with this particular symptom which you can do something about and don’t blame everything on my MS and dismiss me.
I have the opposite I have bladder retention and have to buy self inserting catheters (I got the initial ones from the NHS service, but that was many years ago and since then I’ve paid for them myself. Now I’m retired money is tighter so I think I’m going to ask my GP to supply them as they’ve also been difficult to get during the Pandamic.
I self catheterise, the NHS provide those. When I had urge incontinence I spent a fortune on pads.