For the last 20 years I have been Social Worker to the Oxford Renal Unit, and have seen many changes in that time.
When I started in 1979 almost all patients were treated on home haemodialysis - and most were under the age of 60! CAPD was not yet an option in Oxford. The main part of my job was writing “social assessments” to help medical staff decide whether haemodialysis treatment was a viable proposition, since those who had little or no support at home, or who lived in “unsuitable” accommodation, were unlikely to be able to manage home haemodialysis and would therefore block a precious training bed in the hospital programme.
In those days, we believed that elderly people or those with multiple medical problems, would not tolerate dialysis well, and that it would not be “kind” to treat them. It was, I suppose, the only way that we could reconcile ourselves to the limited resources that prevented treatment of many who could have benefited. My other major task was the counselling of highly stressed couples, often with young families, coping with the strains of being a dialysis partnership. Most patients were combining work, treatment and child care, - and doing so with a haemoglobin of 6.0 or 7.0g/dl! That was before EPO of course.
It was the advent of CAPD programmes in the early 80s that changed dialysis for ever. With a home-based treatment that needed no helper, a whole new dialysis population emerged. Those with diabetes, heart disease, the wheelchair-bound, widows and widowers living alone,- people of 65, 70 - even 80 - all were suddenly “suitable for dialysis”, and many did very well on treatment. To everyone’s surprise, the elderly were among the most satisfied and successful patients, taking to high-tech treatment like ducks to water.
It was, of course, utterly predictable if one had stopped to think. Most elderly patients felt they had nothing to lose and everything to gain from dialysis. They were positive. “I have had a good life already” they would say, “and now, when many of my contemporaries have died already, I have the chance of several more years, thanks to dialysis”. Younger patients saw the limitations, and many were justifiably bitter that their lives and ambitions had been drastically disrupted by renal failure.
My job as Social Worker changed from then on. Instead of doing social assessments, I was arranging home helps, writing to the housing authorities to arrange sheltered accommodation, filling in forms for Attendance Allowance, and generally trying to help elderly patients make the most of life on treatment. The sad thing was that I felt I was neglecting the younger patients. They still needed to talk about their practical and emotional difficulties, they still needed help with relationship problems and with the benefit system and employers, but I was getting spread more and more thinly. All other categories of staff in the unit expanded to cope with the extra load - but not the social work department.
The climate in the NHS was also changing rapidly. Patients were realising that they had rights - in particular, the right to information. Renal patients were already in a privileged position because, more than almost any other patient group, they needed to understand and manage their own medical condition and treatment. It wasn’t a case of them and us. The patient was a member of the treatment team. Even so, there was an urgent need for more information and opportunities to talk things through - especially for pre-dialysis patients. I ran information groups for patients and families from the mid-eighties, using other patients already on treatment, as teachers and demonstrators. They are the real experts and could give realistic information and advice.
The next major development was “decentralisation” of dialysis services. Satellite and Co-provider units proliferated all over the country, bringing outpatient treatment closer to home for many patients. The advantages were great, but one disadvantage was that there was seldom a Social Work Service attached to an outpatient facility.
With the advent of Care in the Community, another and more serious problem arose. Hospital based social workers became “Care Managers”. This involved assessing inpatients for their ability to cope on discharge from hospital, and arranging home care where needed. Each county had its own method of assessment, its own set of forms and its own budget. Outpatients were no longer the concern of the Hospital Social Worker/Care Manager, nor were those living “out of county” - in our case Oxfordshire. Counselling, group-work and advocacy became low-priorities. Patients were told to contact their local Social Services for help. This was not always a success, because local offices seldom had specific expertise in the problems of dialysis patients. They were also too hard-pressed to offer counselling or support.
The changes in the Social Work role caused distress in regional units all over the country. The British Association of Social Work has a Renal Special Interest Group, meeting several times a year, and all members reported the same difficulties. It became clear that, if Units wanted to continue to offer a specialist service to all patients, it would have to be funded another way. Some Renal Social Workers were “taken over” and funded by their Units, some becoming NHS employees. Others were funded by the BKPA in the short term. Where neither of these options has been adopted, the service to patients has inevitably suffered.
The needs of renal patients have not changed in the 20 years I have worked with them. Above all, they all need to be seen as individuals, rather than diagnoses. They want staff to listen and to respond with honesty and kindness. At bad moments, they may need support and encouragement to lead the fullest possible lives in spite of the illness. They also need to know their entitlements - and to get help if necessary in obtaining what is their right.
So, what is a typical day for me? Firstly, a longish drive to one of our co-provider units, where I see a few patients on hospital dialysis. One may need referral to housing, or Community Occupational Therapy because of inadequate facilities. Another has lost her husband and wants to talk rather than receive antidepressants from the doctor. A third needs help to claim Disability Living Allowance. I talk to the nurses in the unit about any problems arising in the past week. I then do some home visits, especially where there are stresses at home involving carers or spouses. Occasionally I visit a patient who has expressed the wish to stop treatment, in order to find out whether this is a cry for help, or a genuine desire to “call it a day”. I then go home to my word processor and write up any reports or letters that may be needed. If there’s time I work on a talk I’ve been asked to give, the next pre-dialysis information meeting, or the patient information booklet which is my current project. It is busy, and it is never dull!
For the future, I hope that Units will all fund their own Social Worker, trained in counselling and with time to talk to patients and, most important of all, to listen.
Page created: 17 November 1999
Last updated: 18 April 2008
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