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  • My Blog ’NHS England Wheelchair Review:
    A Service User’s Perspective – if it matters!’ One Year on…
    Involving service users in the NHS is popular nowadays, in theory anyway. They have even got very fancy names for it like ‘co-production’. We are also called ‘citizens’, not users or patients. How nice! But user involvement is mostly nothing more than being invited to sit in on a meeting, where the agenda and decisions have already been made. Yes that sounds cynical, but it is my experience. The user makes a few comments and perhaps some objections and people usually look at them with a very sad look on their face, similar to a Basset Hound!! They get told, ‘thank you for your input, it has been most valuable’!
    That’s it; then the organisation promotes the fact they ‘involved service users’. They get the tick in the box, press ahead with their pre-planned decisions, and everyone is happy! No actually, everyone is not happy. Service users are generally treated and given as much respect as a piece of dog muck. They are often treated as if they don’t have a brain. And more often than not, any say they do have doesn’t make the slightest bit of difference to the (pre-determined) outcome. This has been my experience so far with NHS England & NHS IQ with regards to the so called ‘wheelchair review’.
    About Me Just a line or two about me before proceeding. I have MND and use an electric wheelchair and communication devices, as well as a range of other equipment. Before being diagnosed with MND in 2005 I was a building manager in the construction industry. My last project was in excess of £200M and had to be completed within one year.
    NHS England Wheelchair Service Review Early 2014 I was asked to attend a wheelchair summit being run by NHS England. We were told the views of service users were very important to shape the future of services. Most people don’t realise, it is quite difficult to get to some of these events, particularly for people like me with complex disabilities. It takes me about three hours to get ready to leave my house, and that is before the journey!
    I attended the first wheelchair summit, trying to maintain optimistic as I have seen so many of these things before. At the summit everyone was full of energy and excitement; facilitators everywhere.
    We were asked on the day to identify some of the main issues with regards to wheelchair provision and then these would be collated into themes, as if the reviews for the past 30 or so years had not already highlighted the issues! There were post it notes flying about everywhere and busy people scribbling notes down.
    Towards the end of the day all of our views were collated and put into six different themes. Then the inevitable; ‘Thank you for your views, they are very valuable!’
    On the way home, when looking at the hand out pack that had been given out in the morning of the summit, I noticed that it included six themes and, lo and behold, they were the same themes that we were led to believe that we had generated by our views on the day! I thought ‘oh no, here we go again, either this is a piece of magic or here we have another pre-set agenda, and we have all been duped into believing this time is going to be different, not another pantomime!’ Did they really think no one would notice?
    Following this, I was then asked to sit on one of the six groups that was formed as a result of the themes we (they) had developed at the summit. There were no terms of reference for the group and it was very unclear what the purpose of the group was, let alone why users were there. There was then a brief discussion about what groups users should sit on, and someone actually said publically that users shouldn’t sit on the commissioning group, but commissioning is where the decisions are made, so why shouldn’t users be represented there? Or maybe the answer is in the question, ‘that is where the decisions get made’!
    It has almost been 11 months since I sat on the first meeting, and I have had no information since, the communication is appalling. I don’t know if I am still involved or not. One lady (service user) at the first (and only) group meeting actually stated she didn’t want this to be a lip service exercise as she was a busy mother of a disabled child and her time was valuable. I have since spoken with some of my other ‘user’ friends and they have expressed the same concerns as me regarding the lack of involvement.
    Then we got an invite to a ‘second’ summit November 2014. This was going to build on the first summit and the work of the work groups (that didn’t meet!).
    NHS England now proceeded to get NHS IQ involved, for reasons beyond me… Before the summit it was arranged for me to speak with someone from NHS IQ for one hour. But at least they could say they involved a service user! I still to this day don’t know the purpose of the call and what they did with my information, if anything.
    The second summit arrived and it was three times as large as the first summit, except this time it was more like the X-Factor Finals!! Lights, technology, cameramen….I think we were supposed to be in awe and think this is the real thing. There was even internationally recognised change activists, and it was being recorded and being watched from around the world!
    Trouble was, there was very little reference to the first summit, and no recognition of the work of the groups. Again the same, or similar, questions being asked all over again (only with a modern, slick twist on them). There was as much substance and content at the second summit as there is in a helium balloon. None of these ‘change activists’ seem to know the first thing about wheelchair services, change for the sake of change is pointless and costly (and part of the problem), and change without substance is dangerous.
    We can regurgitate the symptoms until we are blue in the face, but it doesn’t address the problems. I thought to myself, NHS England doesn’t know what to do, so they invite NHS IQ to create an event, but NHS IQ didn’t have the answers either. Just in passing, about 30% of my friends and fellow MND sufferers would be dead by now since the time the first summit took place. And I would add that the cost to this point for the two summits etc. would probably have paid for 300-400 wheelchairs!
    Then at the end of the second summit we had all the usual questions and ‘thank you for your views, they are very valuable’. It was a case of glamour over content. No answers. No mention of money.
    The honeymoon excitement of the second summit had worn off by the time I got back to the train station.
    At the second summit I had asked seven questions and in these were some of the answers to the problems, but they were too ignorant to realise! These questions were only in part answered after the summit, but I am not sure my questions will have changed anything. So much for user involvement.
    As previously stated I require a range of equipment, not just a wheelchair. I asked about links with other relevant organisations so that all my equipment needs can be met, but this fell on deaf ears. What’s the point of having a wheelchair if I can’t get in and out of my house? NHS England and NHS IQ only seemed to be interested in health needs, but focussing on particular needs and not others is part of the problem! What about housing, education and social care?
    I, together with other service users, then received an email which included a near finished ‘service specification’, and people were asked to get it back within a very short time. But why were people not asked what should be included in a specification in the first place, rather than commenting on something that was nearly finished, so much for user involvement! I saw email exchanges and tweets asking why members of the six work groups had not been involved in the development of the specification.
    I then saw emails from people expressing concern that the ‘eligibility criteria’ was being developed without the input of any service users, or anyone outside of NHS England (I think MI5 may have had input!) but surely the eligibility criteria and the service specification are perhaps the most important part of services, yet service users (and others) had no involvement! And still no mention of money.
    Now once NHS England and NHS IQ realised they didn’t have any solutions, they (almost one year later, when in the meantime a lot of my friends have died) decided to set up a ‘Wheelchair Alliance’, and guess what, there are service users on it, and high profile one’s as well – yippee!!
    But sadly, as I understand it, the Alliance is not looking at the service specification or the eligibility criteria and has no influence on the money side of things either, and it will not be replacing the other six work streams (the one’s that nobody appears to know what they are for). So why is the Alliance being set up? Is it being set up to fail? Is the Alliance really just being set up as a ‘buffer’ to protect NHS England and NHS IQ? So if the project fails to deliver then NHS England and NHS IQ can point to the Alliance, I would be worried about my reputation if I was on the Alliance!
    Here is the situation, according to a simple service user. NHS England ran the first summit and soon realised they didn’t know what to do. So NHS England got NHS IQ involved, with internationally recognised change activists etc., but they didn’t know what to do either. So both of them decided to set up an Alliance, with high profile (and respected) users and individuals on there to see if they could make it work! And if the Alliance doesn’t improve things, then they will get blamed for the failure of others!
    As I previously said, before being diagnosed with MND my last project was in the region of £200M and had to be delivered within 12 months, with little tolerance. And here we are with a relatively simple service 12 months later, no further forward (in terms of actual delivery and benefit for the patient) and with no solutions in sight.
    As a service user and a taxpayer, I would really question NHS England’s and NHS IQ’s ability to deliver and properly engage with service users?
    Is it any wonder some wheelchair services perform poorly when the people at the ‘top’ can’t even manage to understand the issues and provide solutions.
    Call me cynical, call me what you like but I don’t know how long I have left on this planet and I am not prepared to sit back and let this appalling behaviour and great waste take place at the expense of dying and needy patients, especially where it impacts upon the lives of people just like me who rely totally upon equipment, not for social reasons, but just to live.
    Let’s hope my views (and ‘cynicism’) help and support the Alliance in achieving improvements.
    After all, this is just a service user’s perspective, if it matters?
    Liam Dwyer

    11/05/2015
    As someone living with Motor Neurone Disease and lucky to have time on my side it’s really shocking to watch fellow sufferers dying without timely care. The MND Association has spent time designing the
    Neuro Wheelchair with three wheelchair manufacturers. What needs to be taken on board by wheelchair services is time, bearing in mind that 54% of MND patients will die within 14 months of diagnosis. The basic neurochair is actually cheaper than adding accessories as special items, as far as I’m aware it has also been purchased a few times for people who don’t have MND, meaning that the prescription is useful across a number of diseases and therefore could potentially save the wheelchair services money in purchasing equipment as well as in assessment time.

    One of the challenges the MND Association has had is that some wheelchair services will not fund the chair as they say their repairers won’t support riser malfunctions etc. They have worked with two of the leading manufacturers plus one that is up and coming in the market this flexibility is crucial to accommodate different needs in a person’s home.

    I have been using a wheelchair since 2007 and a scooter for the whole of 2006 all funded by myself or the MND Association. When my wheelchair services told me in 2010 they could not afford to pay for my wheelchair which they spec for me, the MND Association stepped in and I had it in 22 calendar days. This proves that a wheelchair can be built and supplied fast when there's no red tape involved.

    As an MND patient what I would like to see is the Neuro wheelchair used taking the patients’ needs into consideration. I'm 1.82m and a raiser is a must on my wheelchair to have an independent life as much as I can. This also helps my wife/carer as long as I can still bear my weight when transferring. A prescription should take the person’s quality of life into consideration and not the cheapest wheelchair to dot the i and cross the ts. The wheelchair users needs to be taken into consideration when writing a prescription.

    1. Will it be used much?
    2. How far will it be driven in a day?
    3. What volt batteries will be needed, these need to be looked at when you’ve got an active user and when a person is of my height and weight (heavy). There’s no point in having a good wheelchair if you are then going to be restricted by the size of the battery.
    4. I’m a heavy user of my wheelchair and spent 10/16 hours a day in the chair so the right cushion is a must for me.
    5. I want to see services combined i.e. AAC and Ventilation for a wheelchair user with MND. If these are not on a wheelchair when people need them they will be confined to their own house and will have no quality of life.
    6. An open mind is good if the wheelchair services could keep this in mind when it comes to new technology if it helps the quality of life to the user. i.e. driving a wheelchair without using the normal joystick.

    To sum up a wheelchair is no good to any person if it’s not maintained in a timely fashion and that has to be a 24x7 service with a replacement chair when needed. I have been told not to use my wheelchair and not given anything to replace it.
    Liam Dwyer

  • Steve E Blog OK, should have done this two years ago when I was first diagnosed with Motor Neurone Disease but better late than never.
  • Wheelchair Tray Blog Although we appreciate that Trabasack can be used by anyone, we are very pleased that one of its best uses is as a wheelchair tray.