Concern over lack of physiotherapy after discharge
There was another family meeting on the 1st February and pretty much the whole meeting was now about Anita’s discharge from Rayners Hedge. I would have thought that such a process could be demonstrated with a flow diagram and a checklist to sign-off. If such things exist then I have yet to see them. For over the last 4 months I have continually stated that Anita will need to continue her specialist neuro physiotherapy when she goes back home to Milton Keynes and I have not yet received a satisfactory answer. When Anita moved hospital even though Milton Keynes is a large city she had to go to Aylesbury to get the necessary services she needed. That fact alone has always made me a little sceptical of what can be provided on her return. I think there could be a shortage of services in Milton Keynes! I have sent a letter to various staff voicing my concerns, you can click on the link at the bottom of this post to read it.
It’s a simple fact that no one knows just how far Anita could progress but if her physical therapy is drastically cut then it’s obvious it won’t help. All the government policies talk about the importance of independent living and getting back to work yet it is an extremely sad fact that it is not backed up with resources.
I have grave concerns that the system can encourage you to give up and not make the most of the potential you may have. The desperate desire for Anita to return home is set against her desire to improve her movement. It’s even sadder that my stand on this issue has caused Anita to remain in hospital because it’s not nice to be there for 15 months but it’s still the best place for her. To replicate the physio she gets at Rayners hedge at home would cost around 250 pounds a week so it would be interesting to make a cost comparison with her stay in hospital! If she becomes independent in the future the savings for the cost of her care over 30 years would be considerable.
Letter dated 7th February 05
I am writing as a follow on to the recent family meeting we had on the 1st February 05. I was informed subsequently that after this meeting you have given Anita a possible date for discharge, the 11th March. Although there are many things that need to be put into place (such as a care plan) before discharge the scope of this letter is to address only the issues that I have real concern about. I thought it was also important to reiterate my understanding of the due process that will need to be carried out before discharge.
From the family meeting my understanding is that before discharge the following steps, with regard to her physical therapy, need to happen:-
- Anita must have a written needs assessment that should show amongst other things the recommended level of physiotherapy and type of programme she should continue.
- We should be given enough time, if we are in dispute with this assessment to go through PALS or other means to seek an independent view.
- We should meet with the staff at the Bletchley therapy unit.
- A clear Rehab programme and timetable of therapy in Milton Keynes should be set out with clarification of how much time she will get with neuro physio’s and how much with support workers.
I am concerned that any assessment of Anita’s needs by Rayners Hedge should not be influenced by resource issues in Milton Keynes. As far as I am aware Anita is still on a Rehab programme and will continue to be on a Rehab programme when she is discharged. Everyone has always agreed at the family meetings that Anita will continue her rehab progress in Milton Keynes. It has never been agreed that she should be changed to a maintenance programme when she comes home. Her current programme involves 5 days of 1 hour sessions with a neuro physiotherapist plus OT. Any significant reduction in this amount could prevent the continuation of the good progress she has made. I am not convinced with the argument that the social therapies carried out by what is called a ‘Rehab team’ should be a replacement for physical movement therapy!
I refer you to my letter dated on the 5th October 04 (copied to ——-) which stated the following:-
If we really are getting to the stage of discussing when Anita is going home we would both feel less anxious if you could reassure us that she would genuinely make better progress at home through the physiotherapy, occupational therapy and care you have identified.
This letter and my strong views at every family meeting has clearly indicated my specific concern over the amount of specialist neuro physiotherapy Anita will receive from Milton Keynes. We are now approaching the discharge date and you have still yet to identify any. There are still many tasks to be completed before discharge yet you have raised expectations that could lead to more disappointment for Anita or the process to be rushed.
I am not sure you understand how strong I feel about these issues. We are all agreed that psychologically Anita desperately needs to move on but her progress towards independent living should be made paramount. I will not let Anita’s future physical health be jeopardized by letting her come home unless the proper structure is in place for her continued improvement.