By Daniel, on August 22nd, 2011
I had a visit last week from the NHS regarding the PHB pilot, it was really just a baseline assessment, they will come back again in six months to see if anything has changed, hopefully this means I will be getting my budget soon.
The man from the NHS filled out a pretty standard research form (which is anonymous), very similar to ones I’ve been asked to fill out before. Questions are asked and you are given a scale of answers, this can be how much you agree with a statement or what your opinion on a statement is. At the end a couple of general questions are asked, such as what you intend to use the budget for, you can also ask questions about the pilot.
As I said above the questions asked are fairly standard, they are aimed to get an idea of your current psychological state and physical health, also general questions are asked at the end like ethnicity, sexuality and religion to categorize you. I’m not sure how useful the questions actually are as many of them are really relative to your medical condition, for example I consider myself in fairly good health, but somebody else who is pretty much confined to bed and needs to use a ventilator for most of the day may say that’s poor health. I also found some of the questions to actually be unhelpful as they group things together that medical professional’s see as intimately related but actually aren’t, anxiety and depression are grouped together, now I have panic attacks in certain situations so I would say my anxiety levels are high, but I am definitely not depressed, of course I’m not ecstatic about my condition and life but that does not mean I’m depressed or suicidal.
Overall it’s probably the only way the NHS can check for changes as it has to fit all cases, but I wouldn’t use these questions as a base for statistical analysis and I’m sure most businesses wouldn’t either.
Perhaps there needs to be a new type of questionnaire developed with consultation from doctors, nurses, HCA’s, private industry, scientists and patients.
These points about questionnaires aren’t specifically aimed at the PHB pilot but the way the NHS handles all questionnaires in general.
By Daniel, on August 16th, 2011
I have been waiting since last year for my bedroom door to be widened, my nurse had suggested we contact the fire safety officer as she was concerned I could not get out of my room quickly in an emergency, I spend most of in my time in bed which is too wide to fit through my bedroom doorway (which leads outside).
We had a nice chat with the fire safety officer, he fitted smoke detectors, told us all my DVD’s should be in cabinets and not on shelves (fumes emitted from DVD’S and CD’s are highly toxic and will kill you before any fire does), told us my electric door needed to be fixed so I could open it to let emergency services in ,and said I needed to take down my blinds and curtains as that would cause access to be difficult.
After this we contacted my OT Mrs.K who arranged for the person in charge of the council’s Disabled Facilities Grant‘s to visit, we went over all our concerns and she agreed to supplying a DFG to widen my door, check and replace the electrics in my room, put in a new electric door and pave a way from my bedroom to the footpath.
This all seemed to be going rather smoothly and I was even told the work would definitely be done by Christmas (last year), of course these things never go according to plan do they? It took some time to get Care and Repair’s architect to draw up plans, I found several issues with these when I did get them and the council also said they wouldn’t fund everything that had been drawn up. Back to the drawing board, literally.
I decided to draw up my own plans which were simpler and show them to the architect, Google Sketchup is a great tool for this. We had another meeting with the council and the architect, during this meeting we were told funds were currently tight and we may have to wait until April, but on the plus side everyone liked my plans and thought they would work.
Again we had to wait, first for the architect to draw up new plans, then for the housing association and council to pass them. Then another problem, all Care and Repair departments in Gloucestershire were brought under the umbrella of Mears, this wasn’t supposed to cause any difficulties, but of course it caused more delays. As everything had taken so long our finances had to be checked again to make sure we were still eligible for a DFG.
Then finally at the beginning of this month we received a letter informing us that the contract had been awarded to Groves building services, I immediately asked my Mother to phone Mears to get the start date and time the job would take, the reply was they weren’t sure, maybe September and it would possibly take two weeks. I wasn’t happy with this reply so emailed Mears to get more specific information, my tone wasn’t particularly friendly as I was rather frustrated that things had taken so long, being slightly stroppy obviously worked though as Mears got in touch again and said the work would start the following Monday.
The builders arrived at around ten, but didn’t really seem to have looked at the works specification very well, they hadn’t even ordered the doors or contacted the security firm who would need to work on them. They decided to have a look outside and then had a lunch break at about half ten, after their lunch break was over they actually got into action, clearing bushes from the garden.
The man from Mears arrived at about twelve to check on things, we were told the previous architect had retired so he was taking over, it was obvious he wasn’t overly happy with the lack of detail in the work specification, but he seemed very competent and answered all our questions, it turns out the job is actually supposed to take five weeks according to the the contract, it would have been nice if the lady from Mears had looked at those documents and not told us two weeks.
After this the builders carried on working until about three then went home, to be fair they had cleared out the garden, although they did leave some mess.
Not an awful first day, but it could have been better with some preparation.
By Daniel, on August 6th, 2011
At the beginning of the year my nurse and I discussed hygiene, I’m currently stuck in bed so only get a bed bath, we decided to talk to my OT Mrs.K. She was very helpful and we discussed options, we came up with a viable option, a shower trolley which was padded and would fit in the bathroom so I could be put in the shower and washed. Everything was arranged for a demo but unfortunately Mrs.K was reassigned to another Job so Mrs.D took over as my OT.
Everything continued smoothly and we had the rep come round to demo the trolley, then we hit a problem, the measurements on the brochure for the trolleys width was not in fact the total width of the trolley including it’s wheels, so we soon found it would not fit through our doorways. At this point Mrs.D suggested that as I was already in the process of getting a DFG to pay for the widening of my other bedroom door which leads outside, then why don’t I ask for the other doors to be widened too? I quickly pointed out this would be a big job and expensive, Mrs.D didn’t mind the expense as it wouldn’t be Occupational Therapy’s budget that was used, it wasn’t really practical for quite a few reasons and would also have delayed the DFG process, the outside door is still not started even though we were told it would be finished before last Christmas.
So it was back to the drawing board, Mrs.D didn’t seem to be doing much so I decided to research things myself, a fairly quick Google search turned up a site for Occupational Therapist’s that had links to equipment suppliers, I found the perfect solution “The Water Genie“, basically it’s an inflatable bath you place on your bed and roll into and an external unit which you fill with hot water, it keeps the water warm as it acts like a thermos flask, it also has a pump inside which is connected to a tube and standard shower head, this allows you to have a wash from a proper power shower in bed.
I emailed Mrs.D with the details and she arranged a demo with the rep, it worked well and we were all impressed, but Mrs.D was acting slightly strangely, she practically ran out the door without discussing what we thought of the Water Genie, only saying she would apply to CHC for funding and if they said no ask her manager. This was strange, surely approaching your own manager first then asking another department was more logical, I was also pretty sure CHC wouldn’t fund it anyway as it was Occupational Therapy’s remit.
I emailed my CHC nurse who agreed they were unlikely to fund it, she suggested I ask Mrs.D to contact her directly to discuss it and possible other funding options, I passed this on to Mrs.D. Whether she contacted my CHC nurse or not I do not know, but the next thing I heard was that she had officially applied to CHC for funding and I may have to wait a month for a reply.
After over a month with no news I contacted Mrs.D again, this is the usual procedure they will never answer if you don’t chase them up (although I never had this problem with Mrs.K), she replied saying she had spoken to CHC just that morning (funny coincidence), and unfortunately they had turned down the application so she would need to ask her manager. After another couple of weeks and another email she told me her manager had decided a shower chair would be adequate and that Mrs.D and the Wheelchair Services OT Ms.Bush would come round and asses me to see what type was needed.
I wasn’t happy with this at all, if all I needed was a shower chair that’s what I would have asked for, so I told Mrs.D I wanted to discuss this with her manager and that as I had already put in a formal complaint about Wheelchair Services I didn’t think it would be appropriate for Ms.Bush to assess me. I was told I should make an official complaint if I wasn’t happy with the outcome, after asking again for her managers contact details I was told to email the office clerk, I didn’t want to pass information through him, so I asked him for the contact email or address of the manager, he replied “I am sorry but I am unable to give out email addresses of other members of staff; however I have passed this email on to Mrs.D and Her manager.”, very helpful, so I asked him for Mrs.D’s managers name instead as I was pretty sure legally he had to give me that, he did, from there it was pretty easy to find her email address.
My RGN phoned Mrs.W (Mrs.D’s manager) instead of me emailing her, she discussed the issue and Mrs.W claimed Mrs.D had not passed on all the information she should have and that a proper assessment was needed, within half an hour Mrs.D was on the phone arranging an assessment with her and a physiotherapist, they still wanted me to have a shower chair and were hoping the assessment would find a suitable one.
After about a month I finally had my assessment, with Mrs.D, my RGN and a Physiotherapist who I had actually known for over ten years, within about twenty minutes everyone had decided that a shower chair was not practical, Mrs.D did keep trying to find ways it could work, but in the end gave in. She reported back to Mrs.W and within a week or so the Water Genie was approved, reluctantly I believe.
It has taken over a month to sort out the paperwork and delivery but I now have a Water Genie and can have proper washes at last.
This is another long, boring story, but again shows if you know you are right and persevere you can get what you need, fighting with the NHS or Social Services is stressful and they make you feel like they are trying to take advantage of the system and should just be happy with what you are offered (even if you wouldn’t actually be able to use what they offer), but fighting is the only way people will ever get what they need, in Gloucestershire at least.
There have been developments with Wheelchair Services, but it will probably be best if I wait before posting anything as PALS are now liasing with them on my behalf, and I want things resolved as quickly as possible, suffice it to say they are still being arrogant an deceptive.
By Daniel, on July 17th, 2011
I received this letter in June regarding my email correspondence with Wheelchair Services and Social Services, lets be clear I did not excessively email or phone them, probably 3 or 4 phone calls and 33 emails (a lot of which were confirming I had received an email) in about 105 days.
 As I was unhappy signing such a limiting agreement, actually I was unhappy to sign any agreement limiting my communication with a public body, I decided to compromise and send the counter offer below.
 I received the following letter in reply.
Quite why Mrs W (OT) felt the need to involve the litigation manager I am unsure, I had not complained about their service and was not the one who wanted an agreement in the first place, I agreed to a meeting with Mrs W, my RGN, Mrs W (litigation manager) and myself anyway.
I prepared pretty well for the meeting, reading up on disability discrimination and then seeking legal advice from the DLS, I was told that the Equality Act 2010 was most relevant to me, there are lots of guides at the Home Office which are very helpful. In my case Wheelchair Services must make reasonable adjustments as I can not use the telephone, this was set to be my main argument.
I had the meeting last week it was far quicker and easier than I expected, the meeting started with Mrs T explaining what the meeting was about, apparently Wheelchair Services have 9000 clients so I shouldn’t expect a quick answer and I should understand phoning or emailing to rush them was not helpful, she then went on to say that the NHS confirmed when an email was received and would give an expected timeframe for replying, which on average would be under 7 working days.
Mrs W then said that she had phoned Ms Bush at Wheelchair Services that morning (great preparation) and that she had told her that Wheelchair Services automatically sends out a confirmation email when an email is received. I then stepped in and pointed out I rarely received confirmation emails and that the ones I received didn’t seem to be automated and usually didn’t specify timeframes, my RGN backed me up on this too.
From there things went downhill for Mrs W as basically her complaint was blown away, I had got people to phone Wheelchair Services and emailed them myself mainly to ask if my emails had been received and when to expect a reply. Mrs T apologised on behalf of NHS Gloucestershire and told Mrs W to check the system as it obviously wasn’t working, personally I doubt such a system is even in place, Mrs W also kept pretty quiet every time it was mentioned a timeframe should be given.
So despite my initial apprehension and stress everything turned out okay, I should receive confirmation of email receipt within 24 hours, enquiries should be answered within 7 working days and I should be given timeframes for replies, this is basically what I asked for in my counter agreement, so why bother with a meeting which wasted time and NHS resources when things could have easily been sorted out by email or telephone? I have no idea.
By Daniel, on July 13th, 2011
There is currently a move to push Personal Health Budgets by the government to give patients/service users more control see this NHS page.
The University of Kent, University of York, Imperial College, London and the London school of economics have joined up for a Government funded research project to assess how well PHB’s work for NHS patients.
Personally I see this as a good step forward, although I’m sure PHB’s won’t suit everyone, for people like me it will give far greater control over my care.
I have been accepted into the pilot for Continuing Healthcare PHB’s, there are only ten patients selected per PCT, five will be a control group the other five will get a personal budget which will be used to buy their own care, either through agencies or by employing people directly. The local CHC team decides who to put forward for the pilot, luckily I get on well with my CHC Nurse and was selected to be one of the five to receive a PHB, I have now also been accepted by the research team, I’m not sure how long it will be until I receive my budget but I’m very eager to start participating.
The pilot scheme will last twelve months and you are allowed to withdraw at any time, quite how this works and how simple it will be I’m not sure, patients will have their care budgets put directly into their bank account, whether this will be a lump sum or in instalments I don’t yet know, you will then be responsible for buying your own care.
The easiest way to pay for care will be to pay an agency, personally that doesn’t appeal to me as an agency will take a large chunk of money for administration costs, and from my experience that administration is pretty rubbish. The other way is to employ Nurses/Carers directly, this is more difficult as you have to sort out things like insurance, contracts, CRB checks and tax yourself, you become an employer and have all associated duties as such, there are organisations out there that will help disabled people with this, Social Services have been providing PHB’s for a while so there is support in place already, although CHC usually deals with more complicated cases so there will be a learning curve for everyone.
So far the pilot seems well thought out and organised, there will be regular checks and questionnaires, and the research team come from very good institutions. In 2012 a report on the pilots findings will be given to the Government, from there it will be decided whether to offer all patients PHB’s or not.
I will keep you updated on my progress throughout the pilot, so far I have just had a meeting with my CHC to discuss the pilot in general and sign consent forms, and have had an email from the research team saying I have been accepted and the project is moving ahead (I also obtained permission to blog about the pilot).
Wish me luck.
By Daniel, on May 27th, 2011
As I mentioned, I had sent Ms.Bush an email with a few questions about the power chair they want me to have, as usual the reply (when I finally got it) wasn’t particularly helpful.
My first question was about speed, I think that a 6 mp/h chair is safer than a 4 mp/h one for various reasons, including the ability to dodge crazy cars appearing out of nowhere and travelling insanely fast, I’ve also had to avoid cars suddenly reversing more than once and would most likely have been seriously injured if the chair went slower than 6 mp/h. Her reply was -
The NHS complies with English law and is restricted to issuing pavement vehicles at 6kmh.Privately purchased wheelchairs may have a higher speed, but this would be theresponsibility of the purchaser as to where it would be used.
Which is strange as they provided me with a 6 mp/h chair before and I know other Wheelchair Services have provided chairs that go more than 4 mp/h, the law she is stating regards Class 2 and Class 3 vehicles which says that any vehicle driving on a pavement must not exceed 6 km/h, it does not say Wheelchair Services or the NHS can only provide 6 km/h chairs.
A chair purchased on the voucher scheme would beexpected to last for 5 years before returning to the wheelchair service for replacement.Remaining with the NHS provision allows changing needs to be met by the wheelchairservice. I t is my clinical judgement and that of Mr.Ken RE that it would be clinicallyinappropriate for you to be issued with a voucher.
My concerns about this comment are not purely that I don’t think she can say that my needs will change drastically within five years, especially as they haven’t changed much in the last five years, and she hasn’t consulted any healthcare professional involved in my care. I am also concerned that an engineer is giving clinical advice about a medical condition, surely that’s not something he is qualified to do, and this was not the only place in the email where she referred to his clinical opinion.
Most of the rest of the email wasn’t so interesting, they seem to have there own definition for several words which are different to mine (and the Oxford English Dictionaries), she said the invacare Storm 4 does not support electric recline, which it does, and made a few other comments which were blatantly untrue.
I have sent her another email to ask her to clarify her comments, unfortunately like a lot of NHS and Social Services staff she is off for half term so I will have to wait over a week for her reply.
So more waiting, but I guess that’s what everyone needs to expect from a government department.
By Daniel, on May 23rd, 2011
This blog may be a bit quiet while I go through the complaints process with PALS, I will continue to update my general postings regarding Wheelchair Services but will not comment on the complaints process while it is ongoing.
By Daniel, on May 21st, 2011
I had another meeting with wheelchair services on Thursday, this time I invited my neuromuscular advisor along too, mainly so she could see how meetings like this work and how wheelchair services assess someone.
They brought in an Invacare TDX SP for me to sit in so they could take measurements and work out what adaptations would be needed, the chair seemed reasonable enough for a mid wheel drive chair, they drove it around my flat to check it fitted through doorways and could be used in all the rooms I needed access to. They did not test it outside which I do feel would have been a good idea.
During the meeting my holistic needs (social interaction etc.) were also discussed, the NHS Gloucestershire Wheelchair Service Guideline 4 Oct 2010 v2 state that the activities of daily living should also be considered, their reply to this was
Wheelchair services only provide wheelchairs to accommodate the activities of daily living within the home, outdoor chairs are provided purely as an extension of this and are pavement only vehicles.
This reply contradicts both the healthcare standards for NHS commissioned wheelchair services and HEALTH CARE STANDARDS FoR WHEELCHAIR SERVICES UNDER THE NHS, which say holistic needs should be considered, also the activities of daily living I have read, and that Nurses in the NHS must adhere to, include social activities and are most definitely not limited to activities inside your home, I was under the impression that the whole NHS must follow the same policies and guidelines in respect to medical needs, obviously wheelchair services have their own set of rules.
I will be putting in a complaint to the NHS about this as I feel social needs such as taking my dog for a walk, going to the park and sitting on the grass with friends and family, driving on uneven ground like a woodland path etc. are important, also driving in the road is often a necessity as pavements can be uneven, or when using dropped curbs to cross a road there may not be another dropped curb on the other side of the road for some distance, when this was mentioned it was suggested I “go round” any obstacles or hire a taxi, very helpful.
I had an email previously from Ms.Bush saying -
I am happy to discuss your activities of daily living at the visit, but these generally indicate essential activities within the home. The indoor/outdoor powered wheelchairs we are commissioned to provide are pavement vehicles and not all terrain or road use models, as we are meeting a clinical need for essential mobility. Many client often have NHS provision and alternatively funded equipment for sporting or extended leisure activities.
This seems to suggest that the NHS expect patients to buy their own chair in addition to the one provided by them, to me this seems a waste of valuable and limited resources for patients, charities and the NHS.
I was also told during the meeting that the rehab engineer had researched a lot of chairs including chairs by Otto Bock, Permobil, Sunrise Medical and Invacare and that this was the only one that met my reclining needs as well as seating needs, I find this highly improbable as my research found that the Invacare Storm 4, Permobil C350 Corpus, Quantum Athena (with tru balance seating) and Sunrise Medical Quickie F55 all met my reclining needs at least as well as the TDX and I can’t believe that none offered similar seating options, especially the Storm 4 which is by the same manufacturer. The engineer also had to ask the Invacare rep during the meeting whether the chair would move when reclined, now during my research I read the manuals for a lot of modern chairs and all move when reclined or tilted but for most the speed is reduced automatically, it seems very strange that any engineer dealing with wheelchairs wouldn’t know this, and even more so as this engineer had claimed to have done a lot of research prior to the meeting.
The meeting ended with me being left to decide whether to accept the TDX or not, I have emailed a few questions about the TDX model they will provide, once I have the answers, and probably after some negotiating, I will accept the chair, it’s decent enough for indoor use but not really any better than my old Storm XS, things don’t seem to come a long way with either wheelchair design or wheelchair services in fifteen years.
By Daniel, on May 14th, 2011
I have made a few enquiries regarding Wheelchair Services adapting private chairs, all have hit a brick wall, the last person I asked was the secretary to the chief executive of NHS Gloucestershire, I can’t go much higher although I will try, below is the letter of reply regarding this -
Not Particularly helpful, it also totally ignores the report “Get Moving – The case for effective wheelchair services” which is partly responsible for the SW pilot, it says -
Wheelchair maintenance
The Muscular Dystrophy Campaign is concerned that many Wheelchair Services refuse to pay for the ongoing maintenance of wheelchairs that have been modified or bought privately. As the NHS has saved money by not paying for modifications or wheelchairs, we believe it should cover the ongoing cost
for maintenance.
The Muscular Dystrophy Campaign has funded more than 500 wheelchairs for children over the past year and is concerned that the NHS will refuse to cover the cost of maintaining these chairs, leaving patients and their families saddled with a great expense.
If a wheelchair needs repairing, users are often told that there is a lengthy wait for the repairs, even if it is an NHS chair.
Wheelchair maintenance should be treated as a matter of urgency, especially where the individual is reliant upon the equipment for health reasons as well as quality of life and independence.
It is quite obvious that the Gloucestershire PCT is not really interested in saving money or listening to reports if it involves them having to re-write any policies or agreements, unlike the Lincolnshire PCT which is actually piloting personal budgets for wheelchairs.
I hope the South West wheelchair pilot forces PCT’s into providing a better service, if not things will probably just get worse for wheelchair users as demand increases.
The letter also says that wheelchair services do not like modifying wheelchairs, this is ludicrous, most people with a complex disability need modifications to fit their needs, wheelchair manufacturers are guided by the most common needs and cannot provide for the more complex needs of someone with Duchenne Muscular Dystrophy for example, it is just not cost effective for a business. The NHS is supposed to be patient centric, treat each patient as an individual and provide for the specific needs of each patient, from what I can see wheelchair services doesn’t see itself as part of the NHS but more a private entity working to it’s own rules. I’m sure wheelchair services are one of the few departments who would welcome Andrew Lansley’s move towards privatisation of the NHS, 57% of their budget already goes to back-office costs, no doubt they would like to increase this number so management gets even more money which should be spent on patients.
I will pursue this further as they give no good reasons in my opinion, change is needed but they seem unaware of this, or maybe they are just unwilling.
By Daniel, on May 10th, 2011
Wheelchair Services have contacted me again to arrange another visit in roughly two weeks time, they are going to bring an Invacare TDX SP and a rep from Invacare with them, while this chair isn’t perfect it’s a big step up from the Spectra they had originally decided on. The lesson here is NEVER accept the first chair Wheelchair Services offer you, they will go with the cheapest chair they can offer, push and they will move.
I also asked Ms.Bush if there was any way I could get modifications to a private chair, I’m also pursuing over avenues in regard to this I just thought I may as well be polite and ask her too, I got a flat out no, Wheelchair Services do not do this and will not negotiate at all, she also said that the PCT/Commissioners would not even consider it (I don’t believe she has actually asked them), even though she did say that in the future this may well have to be implemented depending on the South West Wheelchair pilots findings. This is the typical attitude of most NHS departments I have encountered, they know change is coming but instead of embracing it or trying it to see if the change is beneficial, or will reduce costs, they will flatly refuse to take action until they are forced to, and then they will claim they need time (usually years) to implement it.
There was also a discussion regarding the voucher scheme for wheelchairs, she has not been keen on this option from the start and I actually had to find out about it myself as she never mentioned it, she inferred that I would not be given the option of a voucher as in her opinion my clinical needs may change within five years, this is a nice loophole as anyone’s clinical needs may change within this period and it is purely down to the assessing Wheelchair Therapists opinion.
I know the next point will probably just sound like me being picky and whining about anything Wheelchair Services says to me, but I believe if they are going to use policy against service users then they should also stick to that policy themselves. The last emai from Ms.Bush stated that
“The wheelchair service is commissioned to provide appropriate equipment to meet your clinical needs to facilitate independent indoor mobility initially, and outdoor mobility is an extension of use …. As we provide for a clinical need, if there are additional features over clinical needs (social/leisure choices), then these would generally need to be met from personal or charity funding.”
this sounds very official but in their own policy, sent to me by Ms.Bush herself it clearly states
“The Wheelchair Service provides a service for those clients who have a clinical need to use a wheelchair for essential mobility indoors, and to allow them to undertake their Activities of Daily Living.”
the thing is the Activities of Daily Living include social needs, such as taking dogs for a walk or having hobbies, I personally like going for ‘walks’ in woodland, this isn’t a clinical need so from Ms.Bush’s comment should be ignored.
That’s it for now, so goodbye until next time.
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