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NHS Wheelchair Service

rudewell
rudewell Community member Posts: 2 Listener
Hi, I am a wheelchair user and I work for a company called AJM Healthcare which is contracted by the NHS to provide wheelchairs and other mobility equipment through the Wheelchair Service in various parts of the country. If you are living in the London boroughs of Redbridge, Havering or Barking and Dagenham, I would very much like to hear from you about the service you have been receiving. Thank you. Best regards, Rudi

Comments

  • diyjoe
    diyjoe Community member Posts: 14 Connected
    Hi Rudi 

    I am not qualified to comment as I live outside the areas stipulated, I live near Ashford in Kent, the boroughs you mention are in striking distance.  Have any of your depots got the facility to give basic training in manual wheelchair skills like curb climbing,  If you have, is the training restricted to those people you supply chairs to.
    Regards
    Eric
  • rudewell
    rudewell Community member Posts: 2 Listener
    Hi Eric

    Thank you for your enquiry.

    Unfortunately, the company does not provide training in wheelchair skills but  perhaps this is something they might consider in future.

    One place where wheelchair skills training is available is the BackUp trust, based in south London. Here is a link for them: www.backuptrust.org.uk. I hope they can help.

    Best regards

    Rudi
  • rayrey
    rayrey Community member Posts: 11 Listener
    Would you like to comment on NHS ENGLAND policy of personal wheelchair budgets,how will an open market opinion affect your company
    Regards rayrey
  • diyjoe
    diyjoe Community member Posts: 14 Connected
    I am not a company, but I think it is about time the whole wheelchair industry was investigated. from manufacturers down to the actual providers which are normally profit making companies contracted by local CCG's, the providers having no competition except for maybe at the quotation stage. The quotation stage not being very transparent.

    It is my opinion that wheelchairs should be provided by reputable high street providers with properly trained staff on a competitive basis giving a service that adheres to the NHS model. It is my belief by opening up the market in this way and permitting users to shop around with a decent personal budget would see a fall in the overpriced and often imported wheelchairs. 

    From my experience the voucher system is low in value compared to the final price one can pay for a suitable to personal needs chair, The voucher needs increasing and this could be done by eliminating the current practice of supply by a single CCG appointed supplier. 

    At the moment in my area and possibly the same in most areas, to obtain a wheelchair someone needs to refer you. That someone , as in my case, new nothing about wheelchairs, only the need for one was recognised. However on the referral form, even though I described fully the use I wanted to put a wheelchair to, which I know now was the description  an active wheelchair, a box was ticked by an inexperienced person which referred to a tank,  and that is what I was offered by the NHS supplier. I could not lift it, to put in the boot of my car, and there was no consideration of future needs.

    I think, the sooner wheelchair services are thrown open to a competitive market and the user given a decent personal budget or decent voucher, cutting out CCG  appointed suppliers or making them join a competative market,wheelchair users and the NHS will be better off. 
  • rayrey
    rayrey Community member Posts: 11 Listener
    Great news this week
    NHS England website has annouced that you have a legal right to a personal wheelchair budget so start looking in the open market,
    But remember the battle starts with the assessment, perhaps some of you have  some experience or guidance that could share
    As you can choose what Hospital you attend, maybe this also means you can choose your assessor, not sure about that,
     thought s .any one
    I would like Scope to take the whole personal wheelchair budgets thing on as a project as I predict it could be a struggle for some people 
    Love to you all out  there, together we can overcome
    Rayrey







  • diyjoe
    diyjoe Community member Posts: 14 Connected
    Hi Rayrey.
    You mention "the battle starts with the assessment", In Q&A on the NHS site, it also states the CCG appointed equipment suppliers clinician will carry out the assessment for the personal budget. Most if not all the wheelchair service providers are private companies intent on making a profit, they will not want business drifting away.

    My experience of the current system is my Dr. made the referral and gave medical grounds, but as he was not qualified in wheelchair types, his secretary filled in the rest of the referral form, the rest being an initial assessment into the type of wheelchair required. Usage, hrs. and days of use etc. As it was a tick box answer assessment wrong information was sent to the chair provider. At the face to face assessment the service providers clinician asked again what sort of chair I wanted, she took one measurement and produced a heavy transit chair totally unsuitable for my needs, I left empty handed. On the way out I looked at the suitable active chairs which had a label face down on the seats, on turning it over it mention " available on voucher scheme" I had to inquire what the voucher scheme was The Senior Clinician came out to see me and offered a voucher for £250.00***.  

    I made several complaints to the service provider  at the local depot, then to head office, eventually I was invited to meet the depot manager, the senior clinician, and a wheelchair manufacturers representative. I was still denied a suitable chair but under the guise of trying to help me cobbled together a lightweight folding wheel that I would be able to lift into my car. 
    The clinician had very little input leaving it to the rep. Although when I mentioned the voucher offer was ridiculously low she said she thought £500.00*** was a generous offer.

    The assessment took place mid December Last year and took 8 weeks to supply. or 9 months from first referral.

    After 4 days of use up and down ramps, hoping over obstacles for 10 hrs a day, everything is out of line on the chair,
    even the additional bracing bar which was supplied with the wheelchair is hanging down. The chair feels unstable.
    I contacted the service supplier  about this 10 days ago, under the loan agreement only they can service the chair , I have heard nothing, and have chased again today.

    Unless the NHS employs it's own fully trained assessors who are not tied to the profit making suppliers, just answerable to the NHS. I cannot see how the personal wheelchair budget scheme will work to the benefit of users or allow them to shop around for the best deal.   

    diyjoe
  • diyjoe
    diyjoe Community member Posts: 14 Connected
    Since my previous comment I have accepted a voucher for £550.00 although the over complicated paperwork is yet to be completed, the personal budget system is still being considered in my area and is a long way from being established. I have received from my service provider a short list of three retailers they prefer to work with, all retailers are at the least 50 miles from my home, one a 100 miles, I am told this is not a problem as the companies will come to me.
      
    I visited Niaidex recently and showed interest in a particular wheelchair, within days I received a phone call from the manufacturers followed by a confirmation email to visit me, not only is a rep from the manufacturer visiting he will be accompanied by a London based retailer. I just do not understand why wheelchair companies or retailers are prepared to travel long distances to sell a single wheelchair. How much does this add to the cost of a wheelchair? 

    Obviously like all suppliers or retailers including those big retailers who sell on line or eBay the rep will start with the basic chair price and try to sell overpriced extras to boost their commission. It would be a shame if they did not make a sale after travelling so far?

    It also appears that a lot of wheelchair parts are made in various countries, Germany, Poland, Mexico, USA, If the Government are so worried about the loss of skilled labour in the car and aero industry, is it not possible to put the skilled labour and the NHS together and have a range of British wheelchairs of all types manufactured that would enable the NHS to fulfill it's dreams and remove NON MANDATORY from its recommendations for wheelchair supply?

    diyjoe  


  • Zebra88
    Zebra88 Community member Posts: 55 Courageous
    I live in the North West and I find it so interesting when I read other people's experiences of wheelchair services. Mine has been a struggle but totally different from most.

    I was struggling to walk for years and had been provided with a self propelled chair by adult services who wrote in my care plan I desperately need a powerchair. I couldn't push the self propelled outdoors and have rib problems so barely used it. At one point I twisted both ankles so badly (while on my way to a podiatry appointment XD) I called my GP and asked what to do because I did it that often going to A&E seemed pointless as they just refer me back to rheumatology every time my dislocated ankles wouldn't heal. My GP said he had never prescribed someone a wheelchair in 40 years of of working and there was no way her could do it.

    By chance I was at my NHS OT appointment and while standing up from the chair with crutches my spine clunked and my hip came out at the same time. The OT had to get pillows to prop me up and call an ambulance. She wrote to my GP that they must do a referral to wheelchair services immediately for an EPIOC.

    My GP surgery didn't know how to do it and called me in to fill out the form myself and they stamped it.

    Wheelchair services came to my home, workplace, and about town to check I could drive the chair safely. They took away the self propelled and re-tagged it to be refurbished as adult services didn't want it back. They left me with an attendant pushed so I couldn't go to work for 3-4 months until they dropped off the powerchair. It has changed my life so much I cant even be mad.

    My case had to go to a panel because technically I can walk, I just shouldn't due to injury and pain caused by walking, but the NHS only supply powerchair to people who cant walk at all. They decided that indoor use was met by the fact I would be using it indoors at work, not in my flat which is too small and there is only 1m between each room from a central hallway. I had to get a concrete ramp installed and all of the radiators in my flat moved before I could bring the chair home.

    It is refurbished and breaks, a lot. Since I've had it, through no kind of misuse it has needed new front castors twice as they take old ones off stock to put on mine which already have wear and tear. It has had new wheels and bearings which meant I recently had no chair at all for 6 weeks and couldn't go out to work etc. Every time it breaks they take it away saying 1 week and it's always almost 2 months. It's broken 4 times since I've had it less than a year :/ at the moment it is damaged from the recent repair, one anti tip wheel is broken, and  a brake where they have tipped it up to fit castors, and the kerb climber stick thing always falls off as it's been cut too short. I'm too scared to tell them in case they take it away and I cant go out.

    I dont know whether to just ask for a voucher but I've heard that the value is nowhere near what a similar model would be?
  • rayrey
    rayrey Community member Posts: 11 Listener
    Due to me asking a lot of questions of the HILLINGDON CCG board and attending a board meeting,yes they open to the public r
    I be been invited to meet the person responsible for the implementation of personal wheelchair budgets in NW London,
    I also emailed my MP and got a reply from the Minister of State for personal health budgets
    things are moving,
    If I can do it so can you
    In November they were telling me
    We don't do personal wheelchair budgets and have no plans for them
    Get asking,get lobbying,don't be fobbed off
    Spread the word personal wheelchair budgets
    ARE NOW A LEGAL RIGHT
    Love  rayrey




  • diyjoe
    diyjoe Community member Posts: 14 Connected
    I have followed your example and emailed my MP who in turn has contacted the CCG and Minister of State, Replies are awaited. Whatever the outcome I fear that it will be the current ccg appointed wheelchair suppliers that will award the personal budgets and they will not want to give too much away if it reduces their profits.

    diyjoe


  • diyjoe
    diyjoe Community member Posts: 14 Connected
    I now have a reply from my local MP attaching a letter from the Secretary of State for Health dated the 21st May 2019, it reads " Following consultation , I announced that we will be provisionally extending the legal right to a personal health budget to people who access wheelchair services"   The letter goes on to describe time expectations for PHB's.

    The letter avoids saying very much about personal wheelchair budgets (PWB's) except it mentions "The PWB model offers a clear framework for CCG's  to commission wheel chair services. Note the use of the words model and framework, just like other NHS models, it probably means NON MANDATORY.   

    The letter concludes that a wheelchair user can ask for a personal wheelchair budget now but not all CCG's will be in a position to provide one, but vouchers are still available.  

    It would be interesting to know how many CCG's actually provide a PWB and its value..So far I have found nothing that indicates a time or date for CCG's to include PWB's in there agendas.

    All seems a bit like that word B to me.

    Eric


     
  • diyjoe
    diyjoe Community member Posts: 14 Connected
    To update the subject of PWB's (Personal wheelchair budgets) my CCG tells me "the right to have a PWB budget is due to be passed through parliament early 2020.The principles of PWB's recognise people would benefit from additional functionality of their wheelchair beyond that which is provided by the NHS. To this end we are working closely with other funding partners such as Adult Social Care, Housing and education to identify where offering higher functionality can provide additional benefits to wheelchair users beyond the health needs met by the National Health. It is also considered the scheme will better utilise the purchase prices available and reduce the risk of inflated wheelchair provision"

    In other words the CCG hopes to get additional funding from organisations that are in need of additional money to stay afloat, and as for better utilise the purchase prices available and reduce the risk of inflated retail prices, the CCG 's need reminding it is the present structure of the wheelchair service providers by recommending certain approved wheelchairs and the voucher system that has created the current inflated wheelchair prices.

    Whilst on the subject of inflated prices, I mentioned in another post I took delivery recently of a new active wheelchair and I  attended an active wheelchair users course, just 3 days after delivery. The first thing that was on the agenda was the correct way to start from standing start and apply more pressure after the 12 o'clock forward and downward part of the stroke. Just one push to see how far the chair traveled. Mine hardly traveled at all and pulled to the right. The instructor thought it might be due to tight bearings that would loosen up. Following this I used the chair on various pavements etc which as we all know have camber, it was not until I visited a supermarket with presumably a level floor that I found i could push down the isles with one hand, the right hand and travel in a straight line. I examined the wheels and found the right hand caster was not turning freely, hardly at all. A possible cause of pulling to one side. Without going into too much detail the cause was a small spacer in the wheel costing a few pence to produce. I phoned the retailer who advised me the spacer was not available a  separate part, the whole caster had to be changed under guarantee. 3 weeks later two men arrived to fit the caster, opened the box and low and behold it was the wrong part.. I also pointed out other jigging defects in the chair which they agreed should not be in a chair. Photos were taken and they left, but before doing so they arrange a meeting with senior staff members and the manufacturers.

    To sum up, 3 men came to sell me a chair 2 from the retailer 1 from the manufacturer.  2 men delivered the chair. 2 men came for the replacement of a part which was not the correct part, god knows how many will attend a meeting, and I presume someone will visit me again and possibly take the chair away for examination, and return when sorted. Bearing in mind I live 55 miles from the supplier recommended by the NHS service provider as one that accepts vouchers, and the men do not always arrive in the same vehicles, how much cost has that added to the price of a wheelchair ?  Everyone seems to be a winner from employees, manufactures, retailers, NHS service providers, at the expense of the end user who pays the inflated prices. 

    The cushion I have on my chair is a Jay cushion, The label says assembled in Mexico. but its imported into this country via America and sold at inflated price. My fault I should have looked for a UK manufacturer if there is one.


  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Thank you for this @diyjoe!
    Scope

  • newborn
    newborn Community member Posts: 832 Pioneering
    There is a site by a user....?Mike???...He makes his own, adapts, cannibalises, and has strong views based upon excellent information and knowledge.   I don't  have  the link, but it is an excellent place to read.

    I used to go to Naidex.  These days,  they say most of the revolutionary  ideas are confined to  a German exhibition because  they  need well heeled well informed buyers, and only consider  it worthwhile to  attend one event in  one place  each year.   Why isn't  there something online collating the  worldwide information, from manufacturers and from assessors and from users?  (And if regulations  or measurements vary, then why not standardise?)

    It seems shocking that disabled people and their carers  live year after year in ignorance of the existence of a piece of kit or a handy hint.  A particular disgrace in u.k. is that S.S. and N.H.S. don't even inform customers of the existence of things they know about. 

    Officially,  they are supposed  to supply anything they know will help. Therefore, if they only routinely dish out certain items, they don't want anyone to realise there is a whole, far better, world out there. E.G. they don't provide shock absorbing ferrules, so refuse to inform  people  that for just a few pounds,  they could buy their own, to prevent injuring their hands, wrists, elbows and shoulders. 

     Or, another example,  an o.t. may realise  after years of experience that a two hundred pound near-weightless pure goosedown duvet would be  the biggest help for people who can't sleep because of pain and problems turning within bedcovers,  and difficulties being warm enough.  The public might welcome the information,  because it would be the best use of money  the person or the family have ever spent. But the o.t. will keep it secret, for fear someone will demand a luxury duvet 'free' out of public service  budgets. 

    Another crip-porn site is Fetterman, this time a lifelong crutches user who puts his knowledge into surprising designs for crutches for different purposes and different people.   
  • kc1978
    kc1978 Community member Posts: 16 Connected
    edited July 2023
    So my recent experience of AJM has not been great, they were newly appointed as wheelchair providers in my area. I was never told or offered a PWB. However I did as if I could have a colour other than black. (No cost if purchased privately). I was told that the NHS only allow black to be ordered. Or costs to me would be extremely high as I would not pay the NHS price but the catalogue price. Obviously the NHS is such a big customer they get discount. 

    I am only recently disabled and wanted the option of some personalisation. It would appear this proces is complicated, appears to be costly and does not benefit the wheelchair user but allows manufacturers to make money.

    I am totally shocked at costs of disability equipment, and costs very much are higher for any technology advances. 

    I don't understand how costs of a set of wheels which offer motor assist can be the cost of a small entry car. £4995.00
    That is without VAT. 

    The staff were lovely and I don't want people to think they weren't I did get they style of chair I wanted. 

    I just don't think that anyone is open and honest about the costs and even if you go onto the manufacturer's website there was no information available of actual prices of parts and components and additional cost involved.

    Just my experience recently.
    @rudewell

  • littleacorn
    littleacorn Community member Posts: 367 Pioneering
    It seems as there has been little or no progress in changing how manufacturers and providers of wheelchairs have made since this first post in 2019. How can we with the backng of Scope address this issue so changes can happen?
  • kc1978
    kc1978 Community member Posts: 16 Connected
    @littleacorn
    I really wish I had an answer. I have had nothing but issues since becoming disabled. Refused Carers, Mandatory Reconsideration, I was not contacted although I indicated the report was incorrect and false. I was awarded 7 points. Tribunal gave me 15! I have had to purchase most items my self in including using my mobility to hire a electric wheelchair. I did not meet criteria. However grateful I am getting a self propelled light wheel chair, to help my fitness and for quick trips out. 
    I think that without disability organisations lobbying central government and NHS nothing will change. I just wish they would allow choice to be part of the process. 1 colour black. I also don't understand how I have waited longer for a NHS self propelled wheelchair, than I have an electric with multiple adaptations both being built by the same company.
    Sarcasm - I am paying full price for the electric.
    NHS will be prioritized differently I am sure. 

    I just think the whole PWB concept is a great idea and publicity about choice, where in reality it costs those who are offered it money. A Lot of money (a friend of mine wanted change colour add some different wheels and was quoted £1000). 
    Also costs of any of the modifications are not listed or found on any websites. They are not being open and transparent about this, and that would not allow us to find best deals, cheaper prices.

    I find that being disabled now means everything costs a lot and advances that have come in technology are out of reach to most disabled people.

    I wish someone would be a powerful voice for us.
  • littleacorn
    littleacorn Community member Posts: 367 Pioneering
    The choice you get a disabled person is take it or leave it! Can you imagine if a non disabled person had to go only 1 garage and buy a car and be told take it or leave it! That's what we get if your able to even meet the non transparent criteria.

Brightness

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