Published: 06/01/2005, Volume III, No. 5937 Page 17
I've just emerged from making a complaint against our local wheelchair service.
After countless letters, phone calls and meetings, two reports by independent assessors, and considerable expense on both sides, we have had a short, cheery letter from the trust's chief executive, 'pleased that a satisfactory conclusion has been reached'.
It is now been agreed that my 11-year-old daughter was prescribed a clinically inappropriate wheelchair, rather than the model we and her therapists favoured. The trust has put a big cheque in the post to reimburse us for the lightweight chair we had been forced to buy ourselves.
I should be jubilant because we won. But we are not popping the champagne. Apart from the money, little has been gained from this time and money-consuming procedure.
It seems that every complaint is simply treated as an individual patient who has a problem rather than used as a chance to examine the service itself.
The sad saga began in December 2002 when our daughter's community occupational therapist said she needed a new wheelchair.
When the wheelchair service gave her an appointment six months later, it prescribed a wheelchair we, and her community therapists felt was far too heavy and difficult to propel. It was also, coincidentally, very cheap.
We decided to challenge this decision. We quickly found that the only way to do this was by making an official complaint.
It was clear from the outset that the trust regarded us as 'indians', with itself as the 'cowboys' under attack. It formed a defensive corral, entrenching its forces against us.
At no point was it suggested that we might all work together to find ways the service might be improved. The complaints procedure went ahead without us.
Six weeks later, the trust's chief executive wrote, 'the concerns you raised have been investigated' by the director of therapies and rehabilitation.
But this 'investigation' only involved talking to the wheelchair service itself - the very same people against whom the complaint was being made.
Neither we, nor our daughter's community therapists who had written at length in our support, were approached.
The trust also refused our request for an independent assessment; if we wanted one, we were free to approach charities.
Our complaint was summarily dismissed. That, as far as the trust was concerned, was the end of the matter. The cowboys had fought us off.
But it had only won the first skirmish. We wrote back immediately, restating our request for an independent review. The trust said it wanted a second clinical opinion, made from our daughter's medical notes, to which we agreed.
Unfortunately for the trust, the second opinion declared the trust's choice of chair did not meet our daughter's clinical needs, and a full independent assessment should be offered.
It also made some suggestions for the improvement of the wheelchair service as a whole.
Because, of course, our complaint was not just about our daughter's wheelchair.
It was clear to us, as it must have been to the trust, that the poor provision we had been offered was not a one-off failure in a system that satisfied the rest of its clients. It was a symptom of a far more pervasive problem.
The wheelchair service primarily serves older people who have become disabled due to accident or illness. It therefore does not have the appropriate experience for paediatric wheelchair provision; by its own admission, 'training is provided for basic adult wheelchair prescription', and not for children.
Used to dealing with the elderly who have just lost a limb, the service's attitudes were also less than appropriate. A sign hung in the waiting room: 'The aim of this service is to ensure users have as normal a life as possible.' When I suggested this might be offensive to young people born disabled, who regard themselves as perfectly normal anyway, they clearly did not know what I was on about.
Eventually, the word 'normal' was replaced with 'as full as'. It was two years before the notice disappeared altogether.
Only doggedness on our part kept the complaints process going. Ten months after we had first requested an independent assessment, we were given one.
The assessor's report unreservedly supported us. The trust sighed with relief; it may have lost, but the cheque would be written and the matter closed.
But our file should not be snapped shut so quickly. Unless the underlying causes of our complaint are tackled, the trust will be in exactly the same position when the next persistent family with a grievance comes along.
In our very last letter, accepting that the two-year long process had eventually drawn to an end, we asked that future contact with the wheelchair service be undertaken in a 'spirit of co-operation between client and provider'.
Each and every complaint should be regarded, not as confrontation, but as an opportunity for consultation about service provision. Consulting users is, after all, what trusts are being encouraged to do.
Until this happens, we and a few other families may win our individual complaints. But we will all - patients and providers - lose.
Dea Birkett is a writer on health and social issues and will be a regular columnist for HSJ. Her next column will be published on 10 February. She can be contacted via www. deabirkett. com .
Next week: former prime minister's advisor on health and new regular columnist Simon Stevens.