If you’ve read my Why I Need A Wheelchair post you’ll know that I’ve bee struggling of late. It’s all happened over the past few months & has been quite hard to deal with. I’m currently unable to get out of the house without help, which is making getting to hospital appointments rather a challenging, let alone having any kind of social life. I spoke to my GP & she referred me to wheelchair services. So I thought I would share my experiences of my Warwickshire wheelchair services assessment in the hope that it helps others in the area, as well as keeping you all up to date with what’s going on.
I really didn’t know what to expect from my wheelchair appointment & was unable to find many resources on the internet to give me an idea of what to expect. From speaking to friends with EDS & from the little I was able to find on the internet, I realised just how much the services very from area to area, both in terms of what is available to users & how they are assessed.
The first thing I would mention is that the time you have to wait for your appointment will vary within areas. Six weeks after my GP referred me, I hadn’t had my appointment through. I know these things can take time, but from previous experience of referrals getting lost, I like to chase up to make sure the referral has been received if I haven’t heard anything within an acceptable amount of time.
Appointments locally will generally take less time to come through than the main hospitals for example, so it’s worth baring this in mind. If you do chase up an appointment, always remain polite even if your referral has been lost. Admin staff are MUCH more likely to try to help you if you are polite & don’t make their jobs even harder!
I got the phone number for wheelchair services from my GP surgery & gave them a call to find out if they’d received my referral & to see what kind of wait I might expect. Initially the woman I spoke to seem annoyed at my call. I explained to her that the referral had been made six weeks previously & she was straight away much more friendly & helpful towards me. My referral had been received but unfortunately, the waiting list for the local clinic is so ling that she was unable to give me an estimated waiting time. She did however, mention that if I was able to get to Leamington I would be able to be seen much quicker.
With my impaired mobility & the fact that I can’t drive I had no idea how I’d be able to get to Leamington. Even with normal mobility I can’t get to Leamington unaided as the public transport is impossible for me. So I came off the phone resigned to a long wait ahead. Later that day, I realised that Dan had a two week school holiday coming up! I checked with him that he would be able to take me & phoned them back the next day hoping that they would be able to fit me in some time in these two weeks. I was in luck! We were offered an appointment on the first day of Dan’s holiday!
I really didn’t know what to expect from my appointment. From the experience of friends, I was expecting to have to fight for a lightweight chair because of the problems I experience with my hands, wrists, shoulders & elbows. I was hoping that because I was going to be seen in Leamington, which is a much more affluent area of Warwickshire than the one I live in, I might have a better experience than if I were seen at the local clinic. What I didn’t realise until we pulled up into the carpark for my appointment was that the wheelchair services department was located in a rehabilitation hospital.
Though I was still nervous, I was reassured by this. There was much more likelihood that the staff at the rehab hospital would be understanding of the problems I have with my upper body & of Ehlers-Danlos syndrome as a condition than a local clinic at a community centre would be.
The appointment went amazingly well! I honestly couldn’t have hoped for a better appointment! The woman I saw was lovely & very knowledgable. She first asked me what I was looking for. I really struggle when people ask me what I want. I find it hard to put my feelings into words with people I know well, so for someone I’ve just met, it’s REALLY hard. She could see that I was struggling with this after I umhed & ahhed & then managed a couple of sentences that included “I’m not sure really, I know services differ between area.”
The wheelchair therapist changed tact & asked me a few questions about what I was having difficulty with, if I had tried any wheelchairs before (I was so glad I had hired a wheelchair on a couple of occasions from shop mobility after my knee op so I could tell her the problems it had caused my upper body). She also asked about my lifestyle so she could offer me a chair that was suitable for my needs. Then she gave me the options we could explore & this was what I’m still trying to get my head around.
The wheelchair therapist told me that I could have a self propelled wheelchair, but she would be concerned about the extra pain this would put on my upper body, as well as the fatigue it would cause (I hadn’t even mentioned fatigue so I was really impressed that she knew this is an issue), or we can go down the power chair route! I was absolutely shocked at this. I never expected a power chair to be an option, as my friend Sarah from Sarah In Wonderland, has recently had to set up a GoFund me page to raise the money for the power chair she so desperately needs.
This is a prime example of how much the services vary on what they are able to provide! I was speechless. I hadn’t expected that at all & so I hadn’t planned the direction I would want to go in. Dan was there with me to steer me in the right direction, which I was so glad about. At this point as my brain couldn’t handle thinking on the spot. Dan took over at this point, giving me the chance to process the information na little. We discussed self-propel vs power chair & all three of us were in agreement that I would benefit from a power chair over a manual wheelchair.
So what’s the next step? Because I can loose consciousness with my basilar type migraine, I have to be assessed by one of the consultants at the rehab hospital. This is to make sure that it’s safe for me to use a power chair & that there isn’t a risk to either myself or others. Unfortunately there’s only one clinic per month, so I don’t know how long it’ll take. I don’t think there will be any concerns with me using a power chair & I’m sure my migraine consultant will be in support of it. After that appointment, we’ll look at how accessible the house is for a power chair, as well as whether a power chair is going to fit in our car. If there are problems with either of these there are ways round these, including having the door frames widened.
I’ll have an appointment to test out chairs & will then get one to use. I’ve been told that I’ll have to only use it in the house for a month & after that I’ll be invited back to the hospital to be shown how to use the power chair outside.
So now we wait. I’m very excited that it is likely I will be able to get something suitable for me, especially with the amount of pain I have been in with my right shoulder today! I really hope the whole process doesn’t take too long, but there’s not a lot I can do if it does! It’s better to wait & get something that is just right rather than go for the quickest option & end up with injuries & a wheelchair I’m not able to use.
*Please note, this process hasn’t continued well. You can find out more in my Wheelchair Service Update post.
Check out the Warwickshire Wheelchair Services Eligibility Criteria for more information.
Have you had a wheelchair services assessment? What was your experience?
Find me on:
Bloglovin’ | Twitter | Instagram | Pinterest | Snapchat | Google+
You can also sign up for my newsletter!
I am so glad that the appointment went well for you! xx
Thanks Charlotte! It’s going to take some time to get everything sorted for it, but it’ll be so worth it to have something suitable. Xx
Hi Tania!
It’s so great you had a positive wheelchair services appointment and RLRH and feel that the right decision was made to better your quality of life! I have been under wheelchair services there for nearly two years now and they have been fantastic. Who did you see if you don’t mind me asking? all of the team are great and when you see the consultant they are fantastic too. I had to wait about 3 months to get my consultant appointment, but it was definitely worth it! They have a wide range of chairs that will be available, and its really important to discuss seating with them also, as this can be just a pricey if it is not included with your chair.
The team do have a pretty good understanding of EDS, when I first started going to see them this wasn’t the case, but I believe as well as myself they have had a couple more EDS patients also and have improved hugely in understanding the multiple needs such conditions create. Did anyone explain the voucher scheme to you? As the chairs they fun were not suitable for all my needs, wheelchair services gave us the top voucher limit to contribute to a power chair base and then they got in a company to create all my specialist seating which was paid for by the NHS. The voucher scheme means that the chair is yours, rather than being loaned to you on a long term basis and this has both pro’s and con’s. Obviously giving you more control, but also meaning that any repairs etc. have to be self funded.
They usually like to come and do a home assessment as obviously if your home is not suitable to use the chairs available, there is no point having one. it is a good idea to take measurements of door frames, turning circles and any tricky spaces so you can make the team well aware and chose the chair that is best for you. It is also worth considering how you are going to transport the chair. I have a WAV on the Motability scheme, so I drive into the back of the car, my chair is secured and I stay in my chair to travel. This has been a life saver over the past year and would really recommend looking into your eligibility. If transporting the chair is an issue or if the space at home is an issue then another option they can look into is a self propelled chair with an assistance power pack. This adds the power component without adding a big bulky chair.
I’d strong advice getting a letter from your migraine consultant and having it ready for the consultant at the rehab to see on your first appointment, this will really reduce the waiting time of the consultant seeing you and then having to contact the relevant people for the information himself.
It can be a big adjustment, but a hugely positive one at the same time and im sure you may have mixed emotions. If you have any questions or want to know any more about my experiences please do ask! Myself and my Grandma are both seen at the rehab so its a system I am very familiar with :)
Chloe (www.chloesdream.co.uk) x
(P.S: the picture is of my appointment, I’ve spent so much time chilling in the air whilst they sort chairs haha)
Hi Chloe!
Thank you so much for your comment, I’m so glad you’ve had really positive experiences with RLRH, that’s really reassuring. I was seen by Lisa Partridge. That’s a huge relief that the consultants are good too. I’m going to pull out the relevant letters for them, I think I have enough for them to go on but if I’m not sure I’ll contact my consultants ahead of time. My parents have bought me an inexpensive lightweight self-propel wheelchair that will be arriving tomorrow for the mean time. We weren’t sure how long the process would take & I’ve a number of hospital appointments in the next couple of months. I still won’t be able to get to them on my own, but it will make it easier. It will also allow me to get out of the house which I’m really excited about. I’ve got seating in the back of my mind to make sure I talk to them about. I’d hate to get a chair I can use only to find that it’s too uncomfortable/not supportive enough for me to sit in!
They did explain the voucher scheme & initially I didn’t think I would need to use it if they can provide me with a power chair, as my biggest issue would be self-propelling. I think I’m still in (good) shock that it’s even an option so haven’t considered what else my need are for the power chair. I’ll start making a list so I can make sure we cover everything to pick the right chair &, if not available on the NHS, have options. Thanks for highlighting that, I’m still on cloud 9 & seeing it all through rose tinted glasses!
I’m really glad that they’ve worked on their knowledge of EDS. I was so worried that they wouldn’t even know what the condition is & how it can affect me, hence needing to fight to be understood about my wrist & shoulder problems. It says a lot about a department or professional if they’re able to identify gaps in their knowledge & bridge them. They’ve gone up further in my opinion!
They were lovely about our concerns about our house being small & talked about the adaptions that may need to be made after an assessment of the house, as well as outlining some of the funding options available should we need door frames widening or other work done. We don’t have any steps, which is a bonus, but the porch type area is a square with a 90 degree turn to get into the main part of the house. My husband is really good at architecture style drawings, so I’ve asked hime to draw a plan of the porch area with all the dimensions so I can take it with me to my appointment. It’s small, but we have a table & a basket in there at the moment which will need moving for the self-propelled wheelchair anyway, so we’ll get a better idea of the size from how easy I find that.
The drive in style of car was suggested as an option that we could look into if a power chair is okayed by the consultant. I know hoists are also used & was told that it is possible to break down some of the smaller chairs, but the parts are still heavy & it’s time consuming. I’m not sure which direction we’d go in terms of getting the chair into the car, but it’s good to know we have options. It’s a decision that we’ll have to consider the needs of the people helping me (namely my husband) as I won’t be the one moving the chair into the car unless we go for the WAV option.
Thank you so much for all your support & help, I really appreciate it. I’m sure I will have questions, as I did before the appointment & it’s so hard to ask friends who are in different areas as their experiences & options will vary greatly, so I really appreciate you offering to chat to me & share your experiences. I’m sure I’ll have lots of questions! It’s definitely going to be a positive change & I’m really exited to be able to get out of the house again & have a little independence! I think other people’s responses are going to be the hardest thing to handle & I’ll likely have mixed emotions s a result. I think I need to think through some scenarios & come up with answers that I’m comfortable with so I don’t get thrown too badly by other people’s comments.
Tania Xx
P.s. Love the photo!
Hi Tania, it’s great that you can share your experience so honestly. It’s a really daunting thing, and only made harder because some healthcare professionals don’t fully understand your condition. Find out more about the voucher scheme and don’t let them fob you off with something that isn’t totally suitable!! Good luck x
Thank you so much! I feel extremely lucky that the therapist I saw has an understanding of EDS & is willing to help me, rather than focussing just on the inability to walk & me still ending up unable to go very far. A power chair will make such a difference to my life. Xx
Thank you for that bit of reassurance. I have my appointment with the same service on Tuesday and it’s not been plain sailing to get it, in fact I had to fall and break my pelvis to get help so I’m glad to hear you’ve had a positive experience. I hope all is going well with you and your chair.
You’re welcome! I’m so sorry you have had such a fight to get the equipment you need. I hope things move forward more positively. Please let me know how your appointment goes. I’m still using the self-propel chair my parents bought me in the interim. I’ve had my consultant’s appointment & it has been agreed that I am low risk for a power chair so I will be getting one, but now I need to have the appointment to work out which chair will be best for me & I assume it will then need to be ordered, so I can’t see me having it any time soon. Xx