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.