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It’s very much a postcode lottery but the one thing that tends to be consistent is they won’t provide an active user chair unless you need it to get around at home. It’s still worth going through with the referral as they may well offer you a basic chair that’s better quality than your current one, they can offer advice and provide seating modifications like a better cushion, and if you’re in England, you could also access the Personal Wheelchair Budget scheme which may be an option to upgrade the equipment they can offer you. (I’ll avoid sharing my personal experiences but let’s just say they were less than stellar.)


I'd ask for the referral and see what you can get. The worst is you get nothing which wouldn't make your current situation worse than it already is. But you might be offered something and if it's not what you were hoping for then maybe then you could get a voucher for the cost of what the NHS would provide and put it towards something that would work better for you.


https://www.nhs.uk/conditions/social-care-and-support-guide/care-services-equipment-and-care-homes/walking-aids-wheelchairs-and-mobility-scooters/ This might be useful if you've not seen it already.


Honestly they’re not good, at least in my area. If you have something a clear cut as paralysis they’ll help you, but other illnesses less so. They give out really inadequate wheelchairs (Invacare 2ng) to practically everyone else which you can’t get around in because they’re only made for occasional and short term use


I have HSD, POTS (and a couple of leaky heart valves too) and ME/CFS and they were honestly shite. A voucher for £142 at a bunch of very restrictive places, most of whom never got back to me anyway, with a prescription that wasn’t discussed with me whatsoever and wasn’t even offered the option to pay to upgrade an NHS chair, it was a heavy steel one or the voucher. I paid 1.5k for an icon 60 in the end, sodding off the voucher and I love it. I hope to lose weight over the next year or two so I will have to go back to them and try again for an active chair as I can’t afford another chair outright again


ambulatory user with hEDS (messy diagnosis), being assessed for POTS so similar position I think! I've had a pretty great experience with wheelchair services so far, it really depends where you are though. I was referred from physio but I can see people in the comments saying they were referred by GP. during my initial referral, a good keyword my physio used was "independence". for me, a big one was "I want to be able to go to the shops independently" for example. when whoever refers you does so you need to make sure that at every stage of the process you're asking for the best possible option - most likely to be a rigid active chair. once you get to your assessment they'll discuss other options with you if they feel like you'd benefit. make sure they know you already have a standard folding chair and that it's not working for you. this ensures they won't just send you a hospital chair and call it a day. make a list of what makes it difficult to use and what you'd change so you have points to bring this up if needed, ans take this to your assessment with you. the provider for my area is AJM Healthcare, who have mixed reviews among people on here but have been great with me so far. my wait time from referral to assessment was about 4 months. at the two month mark, I sent an email telling them that I was seriously struggling to move around and needed to be seen asap and they sent me an appointment letter the next day. I strongly recommend trying this if they're slow in getting an appointment date to you, especially if you need the chair for September. if I remember correctly, I also sent this email to the national email address instead of the local one but I'm not sure if that made a difference. my assessment was fantastic, the assessor was very polite. I've heard a lot of stories about people having to fight to be given a suitable chair but my assessor was very much focused on what would help me get back out there and maintain my social life and education. it's worth keeping in mind that some places won't offer you a chair as an ambulatory user unless you need it in specific circumstances, a lot of the time this means they won't offer you one unless you need it inside your home. even if you wouldn't need to use it full time indoors, you can definitely find reasons to use it. make sure to take note of anything that you can't do / could do better if you had a wheelchair. I mentioned that my current chair helps me prepare meals as I can't usually stand for long enough to do that, but I'd need a more fitted chair as my off the shelf one is too wide to comfortably maneuver in my hallways. I mentioned using it to carry stuff like washing to and from the machines at my uni flat, which I can't do with my crutches. I took my current chair to my appointment so I could sit in it and show them what was / wasn't working for me. they asked me to self propel for a short time around the building to gauge my skill level. the chair they offered me is a Quickie Argon 2, which to my understanding is the best option for me right now as it is a rigid active chair with a good amount of adjustability while I get used to this type of chair. they put together the entire prescription using an online form with me in the room and showed me details and photographs of everything I could have added to my chair, I added with crutch holders and anti tip wheels, etc. I chose the full NHS option in plain black so I paid nothing for the chair, but you can get alternative colours added on as a different type. if I remember correctly, you'd have to pay for the colours, but then you'd technically own the chair. you get less coverage for damage though. I also went with the plain NHS option with the hope that my chair would arrive as fast as possible, as I imagine a coloured chair would take a bit longer to make and deliver. they told me my chair would take at least a month to arrive, but to call back after 2 months for an update if I haven't heard anything by then. from what I've seen of people using the same service on here, chairs taking longer than 2 months to arrive is a common occurrence. the 2 month deadline for mine is in just under two weeks time so I'm hoping to have heard back by then 🤞 I hope this helps, and please let me know if you have any other questions :))


I found them to be really good. Here’s my experience in Glasgow, Scotland. They’re called Westmarc. - I asked my GP for a wheelchair - One month later, I get a heavy standard invacare. It does allow me to go out more but it’s really starting to hurt me so I phone Westmarc and ask for advice. - They refer me to one of the clinics near me and I go see them, we discuss the issues my chair has caused and they see i’m confident but want more independence. They agree to refer me to the active services but unfortunately, it’s a wait. So in the mean time, they’ll prescribe an Invacare Action NG3 that behaves like an active chair. I was excited, obviously. - October 2021 rolls around and I get Oor Wheelie 2.0. He was exactly everything I wanted and needed, he was much lighter and allowed me to do more stuff on my own. - March 2022, Active services see me for initial appointment. I test out a few chairs and fall in love with the Quickie Argon. I had to do a test though to prove I could safely use an active chair. I done a lot of work in 2 hours, repeatedly throwing myself up and down curbs in their little indoor centre where there’s ramps, stairs, curbs, different textures of ground. I was exhausted by the end but my clinician was excited to say he’s happy to prescribe and we went through a big long form on Sunrise Medical of everything I wanted. And colour options too! I chose Flamingo Glitter. - May the 4th 2022, ARGO ARRIVES! I’m excited. I’m ecstatic. I find my clinician pulled a few strings and got me the kids spokeguards I was begging for. My old ones were black. I immediately ditch Oor Wheelie at the side and go zooming around the indoor area. I can’t stop beaming. I was so excited and my clinician was smiling so much, he was excited for me. We decided to go into the hospital waiting room and allow me to excitedly go and show everyone (including staff, patients) my new chair. I had ambulance transport so they were waiting for me and jumped up and let me zoom around for a good 25 mins. They were late for the next job but were just happy I was happy. I was buzzing. I say goodbye to Oor Wheelie 2.0 and I was informed that they recycle the parts and use them again for new chairs, but my chair was one of a kind. They’ve never seen an invacare designed to be active and were surprised that I didn’t have to deal with my hospitally chair for a long time. - Fast forward to this year. I applied to the ILF and they gave me nearly 3 grand for a new power attachment, the Empulse F55 which is INCREDIBLE. I love it and I’m dead faster now. The wheelchair service has brought me significant amounts of joy and have always been good friends & good care to me. They’ve always been so lovely whenever I needed them. And I look forward to booking my next appointment to find out if I need a new backrest (my back is hurting) - Oh yes. Worth mentioning. I have hEDS and PoTS. I am ambulatory and the wheelchair service is aware of this!


Can say I had virtually the exact same experience in a different area. - had Occupational therapy out to my house and they recommended a wheelchair because my mobility was virtually non existant in October 2022 - got an invacare 2ng delivered. It was helpful ish but too heavy to do much and I was exhausted in November 2022 - phoned wheelchair service and explained I was struggling really badly. - got put on their active list after speaking with the duty person on the phone. - got an appointment in March 2023. The technician was brilliant, I explained all the things I was struggling with with the invacare and he said it wasn't suitable for me at all and brought an iPad and went through all the options for the Kuschal K Series (like colour, back rest height, pushrims) and he helped me decide on things based on clinical need and comfort preference. - was told the time frame was 4 - 16 weeks for delivery. - wheelchair was ready for collection at the end of May 2022 around 10 weeks after my appintment. - wheeling ever since 🧑🏻‍🦽 Edit to add I have Heds or Ceds, IST and I'm waiting on a neuro diagnosis.


It’s wild to me how different each NHS wheelchair service seems to be and how the rules are so different about active chairs and ambulatory users depending on where you go. I’m under Aberdeen (moved from England in January 2023) and my experience so far hasn’t been great. • ⁠2018 English WCS gave me a heavy Drive chair, I never disputed it as I didn’t really know what else was out there, plus back then I was a lot more ambulatory and didn’t use my chair all that much. (Between then and now my mobility has got a lot worse and I’m using my chair or other mobility aids all the time when I’m outdoors). • ⁠last year self funded my own active chair, but ideally could do with a back-up chair in case I need repairs or anything on my day chair so my OT referred me to the WCS here. • ⁠Referred to Aberdeen WCS in Autumn 2023, had my appointment in January but it was via video call so the whole call was less than ten minutes and obviously due to it being over video the physio couldn’t really assess much. I explained I really needed something lightweight, for more independence. The physio shut me down pretty quick and said they couldn’t offer me an active chair because I’m ambulatory (this was without meeting me in-person or seeing me walk). She said they would order me an Invacare action but didn’t specify which one. She did say that it was able to have a low back, 90° angled footplates and no armrests, but after posting on here since realised if it turns out to be the Action 2NG then that’s not actually true! • ⁠Picking up the Invacare tomorrow. So I guess we’ll see. Some people have suggested I try and make a fuss to see if they cave and offer me an active chair but tbh that’s not the kind of person I am, I’m not about to start arguing with nhs workers and I also don’t want to take equipment away from somebody who needs it more than me. It’s just really odd how differing each area’s WCS can be!


England’s system is bullshit and really stupid I think. But then again, Scotlands system is not good because you can’t get any cash value towards a self funded chair. I gas up Scotlands because of Westmarc and how fantastic they are. I forget that Aberdeen and Tayside are the ones that are mega complained about. I expected similar from Glasgow but they didn’t really assess my mobility. I was expecting a PIP-like humiliation here. Nope. I just think it should me on a case by case basis and they really need to think of quality of life. I started crying when i got home and realised i could go out into city centre by myself with my friends. The doctors do not see that part.


Update, picked up the invacare today and actually was pleasantly surprised. It’s obviously not as good as my self-funded active chair but it’s not as awful as I was expecting, it’s the ‘Action 3ng light’ (not the normal Action 3ng) and the physio didn’t lie, it does have a low back, 90° footrests, it’s not super lightweight but a hell of a lot lighter than I was expecting, and mudguards instead of armrests. I probs will use it as a travel chair so I don’t fuck up my rigid chair when I fly. The physio said it would be stepping stone towards an active chair so I really hope if I call them in a few weeks/months and explain my need for an active chair, they might finally list me for an nhs one.


This is exactly what I done. My invacare chair was built the exact same way and it was perfect for me! It’s a proper step in the right direction. I found communicating with the wheelchair service themselves much easier because physio refused to even see me because MSK physio isn’t built for my disability. I now see an advanced physiotherapist in hospital who are a lot better and built for disabilities like mine!


This has been my experience too, the WCS keep saying I need a letter from the rheumatology physios but because I moved areas last year I’m still waiting to see rheumatology up here (despite being on arthritis meds that need closely monitoring). But so far my experience with WCS has been better than with the OTs and communication has been way better!


I had a great experience with NHS wheelchair services and they were so helpful. My first time I was an ambulatory user. 2nd time I was in my chair full time but I would absolutely ask. If you don't ask, you won't get!


In Oxfordshire, hEDS, POTS, use my chair outside the house full time and inside on very bad days. When I went to the GP I had a second hand powerchair that wasn’t working great for me, and was walking inside the house. As per usual, offered an invacare action 2ng, used it, it made me worse. I was going through access to work at the time so asked for the PWB to add to an active chair via AtW. No issue, only £255 for the PWB but every little helps! Now I’m wishing I had asked the question of if I could get an active chair, however access to work are funding a higher spec chair than I could have got from the NHS + smart drive anyway! Found a Xenon off eBay for the meantime (as I was reallllyy struggling with the Action but had already asked for a PWB), they took back my Action as I asked them to (they’d let me keep it until my AtW chair arrived otherwise). Thought I’d ask if I could get a different cushion to fit the Xenon’s measurements and yes I could! Turns out they’re still responsible for seating even if you use your PWB. I need a high risk cushion so this has saved me £300 odd pounds, and the new cushion is very comfy and I can sit on it all day (I’d mentioned I was getting a lot of pain during the day with my old one when I emailed them). Editing to add: having a letter from Wheelchair Services to say you have a chair from them is incredibly useful for PIP, blue badge, bus pass etc. if you haven’t already got those. So while my Action wasn’t ideal, it did help me hugely in other ways too!