The search for quality leaves behind peace of mind
In the early stages of Anita being in hospital I found comfort in being around people who had chosen a caring profession over a commercial one. I actually enjoyed being around the hospital because our day to day lives are surrounded by so much stuff, there is tremendous energy around and we don’t have time for our fellow human beings. The hospital was calm for me because all I had to think about was how much I loved Anita, what a great time we had enjoyed together and that there was nothing else in my life that mattered except the moment. At that time I had no barriers between me and the staff that where treating Anita. As time passed the experiences I gathered has made me treat Anita’s medical wellbeing much more like a job. This attitude has been forged from my experiences thus far and sums up my current relationship with the NHS. I feel sad that I can’t feel like I did but I would be sadder still if I look back thinking I didn’t make the effort. After all there will be plenty time to retire later.
It is with this in mind that I have written a letter in response to a discharge report that we recently received. I was unhappy with the report for a number of reasons but mostly I just want to see a better quality of service from the NHS for her.
For almost as long I have been writing this blog I have been striving to get Anita as much therapy as possible. The issue that has stood out for me most during Anita’s rehabilitation has always been the impact physical therapy has had on her progress. The saddest realisation for me is that to go home you need to accept a reduction in this therapy. I have set out my arguments in a letter responding to this report, to read it click the link below.
Letter to the rehabilitation hospital
I am writing in response to the discharge report I received on the 26th March regarding my wife Anita Taylor, pointing out what I believe to be errors and inconsistencies. There are parts of this report that are not a satisfactory record of Anita, that will be used by other health and social care professionals as a basis for decision making. I will be sending a copy of this letter to others so that they can get a more balanced view.
The first point I would like to make is that the report is dated the 7th March 2005 yet I only received it 19 days later. The date on the report would lead me to believe there was unnecessary delay between when it was written and when it was sent out.
There are three aspects to the report that I have strong concern about:
- after 9 months in Rayners Hedge I would have expected more detailed recommendations
- the report gives a false impression of Anita
- there are clear errors and omissions
In light of the quality requirements set out by the government in ‘The National Service Framework for Long Term Health’ I think it’s perfectly reasonable for me to expect better standards, I believe my comments will only help to improve things.
Lack of detail and information
I was assured at the Family Meetings that we would get a full needs assessment for Anita on discharge from Rayners Hedge. The report may contain useful information about what was done but in no way constitutes an integrated holistic assessment of health and social care needs centered on Anita. This report and her discharge process has so far fallen well short of the NSF quality requirements 1 & 5. Anita discharged herself early, but a date had been set and plans where being put in place, so I don’t think this can be an excuse. It is the responsibility of the NHS to deliver on this framework and it was reasonable to expect a rehabilitation unit to play the leading role and not to pass so much on to others. The eight sentences of recommendations will mean more of a burden will fall to other NHS staff that will have less time to assess her.
The discharge report also fails to identify a single individual that will fulfill the further roles and responsibilities that will now be required. It is our experience on leaving the hospital that it is now very difficult to identify overall responsibility for Anita. It is totally unsatisfactory the way that responsibility is passed between different NHS professionals.
False impression
Anyone reading the report would be misled by the picture that it portrays:
- There isn’t a single part of the report that talks of the terrific effort Anita put in to the rehabilitation, particularly the physical activities, yet there are comments on what she didn’t do.
- The report gives the impression of a couple who are now unwilling to participate in leisure activities and that Anita is restrained by the stigma of disability, yet we have been out more regularly since Anita has been in a wheelchair than we did before. She has also seen more of her friends (outside work) and family than she ever did before. Anita always stated that the main activity she previously enjoyed was gardening which she carried out at Rayners Hedge only twice.
- The report states Howard’s expectations with regards recovery and rehabilitation remain unrealistic, which is an incorrect comment with no truthful basis. An effort to obtain the best rehabilitation for my wife, to improve and maximise function shouldn’t be interpreted as a lack of realism.
- We must respect and document Anita’s individual needs and her strong desire to use exercise as means to improve her independence. In spite of being told by Rayners Hedge in November 2004 that she was unlikely to achieve any further functional gains for her left side the report highlights the excellent, functionally worthwhile progress she has made since then.
- Anita demonstrated significant improvement in mood when taking part in formal therapy sessions, particularly physiotherapy; this is given small coverage in the report. After identifying many activities that lifted her mood, the report fails to identify a single one in the form of recommendations!
Errors and omissions
- There seems to be a slight inconsistency regarding Anita’s ability to make transfers, the OT identifies that Anita is able to manage transfers independently. The physiotherapist correctly identifies risks in the transfer so she needs someone to help her for all toileting requirements. This is a very important issue to be clear on because it could give the wrong impression as to her care needs.
- There is no mention in the report that Anita suffers occasional bouts of sickness that seem to come each month and last for a day. These are usually treated by medication but can leave her unable to attend therapy when this occurs.
- Her complete prescribed medication has not been identified. She can take paracetamol and has two types of anti-sickness; it could be dangerous for her to take anything else.
- There is no mention of the regular periods of deeper depression which come and go and don’t seem to be triggered by specific events.
- The comment that Anita is reluctant to make changes to her home must be balanced by what she has already done and will continue to do. The notes from the Family Meetings demonstrate that a permanent ramp was installed at the front with decking to the rear in September 2004, the decision to convert the garage to a bedroom and bathroom was discussed at the last Family Meeting. The fact that all of these are costing a significant amount of money demonstrates acceptance of Anita’s long term disability.
Physiotherapy
Since October 2004 it is well documented that I have continually asked for Anita to continue a similar amount of physiotherapy on her return to Milton Keynes. We have been told on many occasions and the report states that there is likely to be a reduction in all therapies on discharge. Is there a rule in place that states when you are discharged you will receive a reduction in physiotherapy? The report falls short of a full needs assessment of Anita’s physiotherapy requirements, more assessment will be carried out in Milton Keynes, how then can we be told of this reduction before this is complete. A person-centred service requires a full needs assessment that will look at individual requirements. These points demonstrate why I have already expressed my wish that to guarantee an impartial assessment it should be carried out by someone not concerned with resource issues.
I think it was reasonable to expect much more from a major rehabilitation unit that observed Anita for 9 months than one sentence of requirements. That sentence identifies the need for input to optimize function but fails to state how much. At all the Family Meetings it was clearly agreed that on discharge Anita would be told how much physiotherapy she needs, and also that she will continue on a rehabilitation programme not a maintenance one. The programme in Rayners Hedge that provided good progress involved 5 days of 1 hour sessions with a neuro physiotherapist plus OT. This information is not on the report and how can a significant reduction of for example 2/5 enable the continuation of the good progress she has made? The report clearly points out several benefits of gait re-education, Anita had been receiving this around 3-4 times a week in Rayners Hedge, so I fail to see why this can’t be identified as part of a continuing programme.
Summary
As a record of Anita the report has serious errors and mistakes and certainly doesn’t qualify as a full needs assessment based on her as an individual. Much worse is that Rayners Hedge had an excellent opportunity to set out detailed recommendations and information that would benefit her as an individual. Until I see more evidence that decisions are really made on the basis of what’s best for an individual rather than resource based I will continue to look for an independent assessment.
I would prefer that for future health and social care the aspects of this report I have pointed out would not be used to form impressions or make judgments. It’s also the duty of Rayners Hedge to decide what obligations there is to patients on discharge and if these meet the quality set out by the NSF. We are now concentrating on the future and wish to go forward because it is in the best interest of Anita.