Well here we go again, another NHS department, another arrogant budget watcher in charge of my case, this time I will call her Ms.Bush.
I was supplied a Storm Power chair many years ago (1996?) by the wheelchair assessment centre, within the past few years I have used it less and less due to panic attacks, until just over a year ago when I stopped using it altogether (although I have sat in it just not used it to move around).
At the end of 2009 Continuing Healthcare arranged for a care package which provides carers for personal care and feeding. They also provide a Registered Nurse to allow my Main carer to leave the building.
We had a couple of follow up meetings with CHC and other medical professionals to discuss a general care plan and how to improve my health and quality of living, during one of these meetings my lack of use of my power chair was discussed. The consensus of the meeting was that I should be encouraged and supported in using my power chair again, it was agreed that I should be assesed by the wheelchair centre to see if they could help, and to discuss having a new power wheelchair which would fit my needs better, the meeting was attended by my CHC nurse, my respiratory nurse, my neuromuscular advisor, the agency providing my carers, my main Registered Nurse who provides my weekly nursing care and my community nurse.
Following the meeting, as I was now having less panic attacks and had a good support team, I agreed to a wheelchair assessment as I felt this would be beneficial to both my health needs and give me some independence which had been lacking (I believe independence is a major goal of the NHS).
The meeting was arranged for November 2010, during this meeting, headed by Ms.Bush (O.T. from wheelchair services), my health needs were discussed and my power chair was looked at, I did not feel particularly involved in the discussions, with some of it even being conducted outside of my bedroom where I couldn’t hear what was being said. At the end of the meeting I was told that I needed a new power chair which would need a moulded seat, and that my current power chair was unusable, I would also need to prove to Ms.Bush that I could sit up in a fairly upright position for over 30 minutes and that I could only have a new chair if she felt I would use it regularly.
At the time I could not meet Ms.Bush’s criteria, so it was decided that my registered nurse would contact her again as soon as she felt I would be able to pass a further assessment. I also agreed to both my manual and power chair being returned to the NHS, following the meeting I discovered the power chair still worked, I had wrongly assumed when I was told that it was unusable that it was no longer in working condition, so I asked my Mother to inform Ms.Bush that I would like to keep the chair to help me prepare for the next assessment, which she agreed to.
During the meeting Ms.Bush did not seem interested in what I had to say, I was given very little chance to participate in the discussions and was not really given any options or choices besides those decided by Ms.Bush, by the end of the meeting I was very dissatisfied and felt pressured into following Ms.Bush’s chosen path.
In February Ms.Bush got in touch again saying that my power chair was due a service, but that she felt it was not worth servicing as I may be applying for a new power chair soon, and she didn’t want to waste money making any repairs to my current power chair should it be needed. I asked my registered nurse to phone Ms.Bush to see what could be done as I was not yet happy for the chair to be taken away, after some discussion Ms.Bush agreed to let the chair be serviced with the condition that my nurse take full responsibility for my safety should I use it.
The engineer came to service the chair and decided he would need to take it away to fix it, I was worried that the chair would not be returned, he made a phone call and then returned guaranteeing that it would be returned. A few days later it was returned without any batteries leaving it in an unusable state, we were told the chair would need new batteries and a new joystick control unit (I do not personally believe this is faulty) and Ms.Bush was unwilling to fund this even though she had agreed to service the chair previously.
As I was extremely upset with this outcome I emailed Ms.Bush, her reply was extremely unsatisfactory and I believe she is breaching several codes of conduct, the NHS policy for patient centric care and other NHS policies, and possibly even restricting my human rights.
Some choice quotes from the emails Ms.Bush sent me are below with personal analysis of key points from her emails.
I then asked my Registered Nurse to phone Ms.Bush again, she somewhat backtracked on what she had previously said, and stated that a like for like wheelchair swap had been offered at the meeting, and that she was still happy to proceed with this (neither my nurse, my Mother, my other O.T. or myself have any recollection of this offer), she also agreed to send out an engineer to adjust my power chairs recline and tilt position so I could use it again to build up my stamina. The engineer has been out, he put my old batteries in the chair so he could adjust it to my preferred position, then took them away again, and another meeting with Ms.Bush was arranged.
I received another email stating that Ms.Bush was bringing a Re-Hab engineer with her and that they had decided the most appropriate chair for me was an Invacare Spectra Plus/Comfort so they would bring that too.
I suspected the Spectra wouldn’t be a good chair so did some googling, this review pretty much sums everything up, other than being pretty rubbish it did not nearly match the specifications of my old Invacare Storm XS, I also found out it’s one of the standard power chairs offered by most wheelchair services around the country (if you are offered this chair please read the review above before accepting it).
I decided however to continue with the meeting and have worked at increasing my stamina and sitting in the un-powered chair despite pain and discomfort (I am not physically able to change my position in the chair without powered tilt/recline to ease pressure and get more comfortable). This has gone well and I should now be able to use a new chair, unfortunately I can’t go any further without batteries for my old chair or a suitable new chair.
I was willing to wait as the meeting was due this week, but, there’s always a but isn’t there? The Wheelchair Services receptionist phoned Monday morning to say they had had to cancel the meeting, the next available morning appointment is the middle of next month, so until at least then I cannot leave my bedroom.
As you can imagine I’m extremely frustrated by all this, I have sent an email to Ms.Bush requesting she supply me with some loan batteries until the meeting, if she doesn’t reply soon, or if her answer is no, I shall be getting in touch with various other people including PALS.
For now I wait……
ANALYSIS of first email from Ms.Bush –
Equipment is provided for regular use, but not for very occasional use e.g. a holiday or one off event.
– is she assuming I will not use it regularly, I never said it was for a one off event or holiday.
– does this mean cancer or other possibly terminal patients are not eligible as they may not get chance to use it frequently.
You may recall that during our visit (11/10), you had agreed to the collection of the Storm powered wheelchair as it was discussed that it would not meet your current physical and mobility needs
– The discussion regarding the wheelchairs condition took place outside of my bedroom and I was not involved in it at all.
– I was told the chair was unusable, this led me to believe it did not work, after the meeting it was clarified for me that the chair still worked, I immediately contacted Ms.Bush to say as it worked I would keep it until a suitable replacement was found.
– I am not stupid and obviously recall what was said at the meeting.
we discussed that it may be appropriate to be considered for custom moulded seating
– This was discussed between Ms.Bush and her colleagues, and again I was not really involved until she had made a decision, I was not keen on this decision as I said I wanted a recline feature from the very start of the meeting.
– No other seating options were given to me.
A manual recline and tilt wheelchair was discussed, but you preferred to explore the powered wheelchair option.
– A manual chair would give me much less independence than a powered chair.
– Ms.Bush actually suggested the manual chair as a temporary measure before moving to a power chair, this sounded like a waste of funds to me.
You reported that the wheelchair had not been used at all in the last 12 months, and use has been very limited in the previous 3 years.
– No I said that I had not used the wheelchair outdoors in the past 12 months, I had sat in it.
– It was stated that my Mother had used it outside at the beginning of 2010 (to test it worked fine).
– I explained my use had been limited due to severe panic attacks, which I was beginning to manage, I also stated that it was only recently I had been given support staff including an RGN, and that before this it had just been me and my Mother, and that I felt with an RGN as well as my Mother present it would be much safer and less stressful to start using the chair again.
We agreed at the visit that you would need to build up your sitting tolerance to at least 30-60 minutes after being hoisted out, in order to further assess your needs to decide on a replacement wheelchair that would meet your current needs
– Yes we discussed this, but obviously without my wheelchair working there is no way to do this.
I later had a telephone conversation with your carer, who requested that although it was understood that the seating would not meet your current needs, it would be used as part of a programme for you to start sitting out and build your sitting tolerance in advance of a further assessment for a replacement wheelchair; there is no other seating available for you to use for this purpose. It was agreed that although this was an unusual request, if it would assist in regaining sitting balance, then I would agree to the chair being kept.
– The conversation was with a registered nurse not a carer.
– Yes Ms.Bush agreed to let me use the chair to assist in regaining sitting balance, but as she insisted on a service first and returned the chair with no batteries I can not use it as she had agreed.
The wheelchair service, however, does not provide wheelchairs as a replacement for armchairs.
– I find this an inappropriate comment.
Following a visit from the repair service to undergo annual maintenance, they reported that 2 key problems were identified with the chair:
1) as the batteries had not been charged for a considerable time, they were no longer holding an effective charge, were starting to over heat, potentially making them unsafe and a fire risk.
– The chair had been regularly charged which Ms.Bush was made aware of at the meeting.
– If they were not holding their charge it was purely because the wheelchair center had not replaced them in years.
– I was assured the chair would be returned to me before I let the engineer take it, obviously I should of made it clear that I wanted it working when returned.
2) the wheelchair control system was not functioning safely, as again it has not been used for a long time; it was jerky and unable to be driven forward safely and consistently.
– As stated the control had been used recently, and it was working fine when it was last used.
– I fail to see how an electronic device like the control system would be caused problems through not being used, this seems totally ridiculous and un-scientific.
– When the engineer was here it moved forwards fine.
– The chairs tilt and recline features could still have been used safely to allow me to build up sitting tolerance (the price of new batteries is far less than providing another solution).
We took the advice of the engineers and agreed that as the chair was only being left with you to assist with building up your sitting tolerance, and not for driving around, the batteries would be removed
– How can I do this without batteries to power the tilt/recline feature? She seems to be contradicting herself.
Unfortunately, you have been unable to use the chair for some time, and the chair has fallen into a poor state of repair
– As stated above this so called “poor state of repair” has nothing to do with lack of use.
– She seems to be inferring we have not looked after the chair, this is untrue as we have used it in accordance with the manufacturers specifications and advice given us by her engineers.
as your needs have changed, a replacement chair is required. I am happy to assess for a replacement once you are able to manage sitting up for the required length of an assessment (as agreed on our visit) in a more upright ‘chair shape ‘
– How can I increase my sitting up tolerance (as agreed) without the wheelchair working? She is basically stating that although she agreed to several things to get me ready for further assesment that she will not hold up her end of the deal, therefore there can be no new assessment.
could potentially put you at risk due to the lack of support offered by the seating.
– I can not possibly prove to her whether there is a potential risk without her seeing me in the wheelchair, which I cannot do as it does not work. Adding this comment seems purely to be an excuse and totally pointless.
On the visit it was agreed that you or your carer would inform me of when you felt ready for a further assessment for a replacement wheelchair. The offer remains to carry out the further assessment to decide on a new chair and seating to meet your needs, so please let me know when you are able to proceed and I will for the necessary appointment to be arranged.
– She is a registered nurse not a carer, Ms.Bush seems to be consistently making this error although she knows this fact.
– As repeatedly stated above Ms.Bush is giving me no chance of a future assessment, this paragraphs only point is to make it sound like she wants to help me get into a wheelchair again.