Wheelchair Services Update

You may have noticed that I’ve been rather absent on social media. If I’m honest, I’ve gone into hermit mode. I can’t cope with life right now. There are a few things that are contributing to this, one of which is my current wheelchair situation and my experience with wheelchair services.

If you’ve read my Warwickshire Wheelchair Services post, you will know how impressed I was with them in my first appointment and how excited I was to be eligible for a power chair on the NHS, something some of my friends are not entitled to because of the NHS Trust they come under. Unfortunately, things have not progressed positively.

In my initial appointment, Dan and I were lead to believe that a power chair would be inconvenient to get into a car, but not impossible. We specifically asked whether a power chair would go into our Mazda 6 and were told that a power chair does come apart, but that it would take 10 minutes to do this and is heavy. This lead us to believe that, while it would be a major pain in the bottom, it would in fact be possible.  We were also told that I was not eligible for an active user chair. So with that option seemingly not available, we went ahead with the process of getting a power chair.

I attended the consultant appointment. This was necessary because I have lost consciousness in the past because of my basilar type migraine. I had to convince the consultant it would be safe for me to use a power chair. This wasn’t difficult, as I haven’t lost consciousness in over 2 years.

Next, I attended a ‘driving test’ to demonstrate that I would be able to control a power chair safely and sensibly. This was also fine. Following that, I had an environment assessment. Here, they checked the house was big enough for a power chair and that there were no obstacles that would make using a power chair problematic around the house. It wasn’t until the end of this appointment that I was told that a power chair will not go into an estate car. I was told that even if it fitted, the car wouldn’t be safe to transport the weight.

I was angry and upset by this. Why hadn’t I been told that a power chair would not go in our car!?! The man from wheelchair services who did the home assessment advised me to get the power chair and sort transporting it later. This seemed like a ridiculous idea to me and very poorly thought out. The home assessment guy told me that he would send me some information on wheelchair accessible vehicles and power assisted wheels, which are an option to help use a self-propelled wheelchair.

Power assist wheels look like normal wheels on a wheelchair, but they have the added benefit of using electricity to give every push you make extra oomph. So you need less force to get the same result. There are some with an inner rim option where you don’t even need to push, you just touch the rims and the wheels start to move until you take your hands away!

The wheelchair services home assessment guy had sent through information on wheelchair accessible vehicles. He included power packs rather power assist wheels, which was unhelpful. Power packs are used to help carers pushing wheelchairs, not a user wanting to self-propelling. So clearly I hadn’t been listened to me.

I phoned wheelchair services to discuss my options as soon as the home assessor had left. The wheelchair therapist I had been seeing only works Thursday and Friday. I hadn’t heard anything by Friday, so phoned up. I got a phone call back from them late that afternoon.

When I finally got to speak to the wheelchair service therapist, she didn’t give me a straight answer about whether the power chair would fit into our car at first. I got cross when she told me that a wheelchair fitting into a car isn’t an important consideration. YES! YES IT IT!!!!! I finally got her to give me a straight answer. A power chair would not fit in our car.

I’d been stressed about this since Tuesday, but had been hoping that the wheelchair services home assessment guy had been the one who wasn’t giving me the right information. I’d come up with some alternative options in my head, so I put these to the wheelchair therapist. These options included an active user wheelchair with power assist wheels.

I was honestly shocked at how the wheelchair services therapist advised me. She told me that I would be better off getting a power chair and using the wheelchair my parents bought me for when we use the car rather than getting an active user chair and adding power assist wheels. Despite the chair my parents bought not being suitable for me to use more than a couple of hours at a time. I used it for three and a half hours on Saturday. After two hours, my back was extremely painful. As I write this on Monday, I am still struggling with my back and hips, caused by the chair my parent’s bought.

Don’t get me wrong, the chair my parent’s bought me is great for what we wanted. Something to tied me over until I could get the right chair from wheelchair services. My parents buying me a chair has allowed me to go to hospital appointments and get out of the house once a week, which I am extremely grateful for. I’ve a review of my Drive Medical Ultra Light Wheelchair if you wan’t to know more about it.

I’m surprised to be advised to use a power chair when I can (which will be around the house and once a week to the shops and/or doctors) and then be pushed in the self-propelled chair my parent’s bought when we need to use the car for the following reasons:

• I can only sit in the self-propelled chair for short periods of time. It is not set up for me and causes pain after a while
• I am planning to become pregnant and need to support my back. The self-propel chair does not do this
• I will gain very little independence I’d I have to be pushed in the self-propelled chair when ever we need to use the car
• Not having a suitable chair to go in the car makes it less likely I will be able to return to employment in the future
• When I have a child, I need to be independent. It would not be fair on the child and could be dangerous if person driving the car has to push me in a wheelchair rather than focus their attention of my child

The things that require us to use our car so I will still need to be pushed to allow me to do include:

• Going to a concert. My husband performs regularly and I enjoy watching him
• Going food shopping. Because we need the car to get food home
• Going out for a meal. There is nothing within walking distance
• Going to the cinema. There is nothing within walking distance
• If someone is accompanying me to a hospital appointment we would need to use the car
• Going on holiday
• Going to visit friends and family
• Going out on a day trip
• Going to Dan’s school functions. Without a suitable car, I would need to get myself home from the school (over 33 miles) on the train while Dan drives home.

Things I will be able to do independently with a power chair:

• Use it round the house
• Go to the local shops
• Visit the doctors

Reasons a Wheelchair Accessible Vehicle is not an option:

• I am not currently eligible for the Motability scheme (You need to receive the enhanced PIP award to be eligible)
• I don’t know if I will be eligible
• If I am eligible, we will need to keep our current car. You are only permitted to use a Motability vehicle for the benefit of the disabled person. I’m not convinced the Motability scheme would see my husband going to work as benefiting me. So Dan would need to keep his car. Two cars is not something we can afford
• Power assist wheels, though expensive at £4,500ish, are nowhere near as expensive as a WAV.

Power assist wheels would allow me to do all these things. The Quickie WheelDrive does not require you to put any pressure on the wheels at all. All you do is hold the inner rim in the direction your want to go them and they start. There are also options like the Alber E-Fix that turn a manual chair into a power chair that is controlled by a joystick.

Power assist wheels will also be a benefit if I were to start loosing consciousness again. All I would have to do is put the original wheels back on and I would be perfectly safe. With a power chair, I would be back to relying on the off-the-shelf self propelled chair my parent’s bought, which I can only use occasionally because it is not comfortable for regular use.

Bromakin in Loughborough have as show room with the different types of power assist wheels available to try, so I would be able to go, try them out, compare the options and choose the one best suited to me.

Why I need an active user char rather than a standard light weight chair:

• Dan, Mum and Dad all have shoulder problems. Dad also has back problems. My sister has EDS herself. They are my primary carers. They are the people who will push me when needed and put the chair in the car
• It gives me the most chance of being able to push myself when I’m able to
• I want to be able to return to my active lifestyle, including being a Girl Guide leader. An active user chair will give me the best chance to participate as much as possible in activities
• I am unable to drive. Anywhere I go on my own, I need to be able get to and then get on public transport in my chair. This will be easier and I will be able to do it more often in an active user chair
• Easier to manoeuvre in small spaces, such as our house
• I would like to be able to go back to work. A wheelchair that is light and easily maneuverable would be vital to me doing this.
• I can’t use my 13.7 kg chair more than one day a week. A 14.2kg chair will be harder. A 9.2kg may make all the difference (particularly if I can put power assist wheels on it).

I deciding that a power chair was definitely not the way forward and that I don’t trust the therapist I have been seeing. I phoned wheelchair services to ask for an appointment with someone else to discuss a self-propelled wheelchair. This conversation seemed to go well. The admin I spoke to could understand my concerns and seemed worried that I had been advised to use a chair that clearly isn’t right for me. She said she’d speak to a senior wheelchair services therapist and get back to me.

I had a phone call back within the hour. Initially she wasn’t able to give me an appointment as there was nothing available, but then she noticed that I am not local to the Leamington Rehabilitation Hospital so she checked my local area and was able to offer me an appointment on the 7th July with a senior wheelchair services therapist. Perfect! Or so I thought…

I received a call a few hours later to make an appointment. I thought they were concerned at what I’ve been through and wanted to offer me an earlier appointment. It turned out that the appointment I had made earlier in the morning hadn’t been put onto the system. So I was offered another appointment, but with the person I had already seen. I was exasperated at this point.

I calmly explained that I had seen her, feel she has advised me badly and want to see someone else. I was informed that if I had been given the original appointment (which I was!) that would have been with her anyway. Seriously!?! Is anyone actually listening to me??? So an appointment was made with someone else for the 6th July.

After the mix up with the original date, I don’t trust that I’ve been put on the system for the 6th July appointment or that it won’t be with the person I have already seen. Quite frankly, I wonder whether the whole department are incompetent. I really hope this isn’t the case and will go into my appointment hopeful that I’ve just had a run of rather bad luck. I’ve enlisted the help of the Patient Advisory Liaison Service (PALS) to make sure my appointment is going to happen and won’t be with the original wheelchair services therapist, as I just don’t trust what I have been told.

If you’ve made it this far, thank you. I’ve mainly written this to get it off my chest. I’ve been sleeping very badly as a result of the stress caused by wheelchair services and am hoping that putting my fingers to the keys of my laptop will help get the stress out of my head so I can get some sleep. The last three nights I’ve got 3 hours of broken sleep and it’s really affecting my hEDS related pain, PoTS and migraine.

I’ll keep you posted as to how I get on. I’d really appreciate any tips or advice you may have if you’ve been through the process of getting a chair from wheelchair services. I know each NHS Trust has different criteria, but it’s helpful to speak to other wheelchair users about their experiences.

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