Many of you will be familiar with the serious concerns about Social Care expressed through the media.
You may have heard on the News recently about the Dad, disabled and hospitalised since last Easter. He has a wife and children at home who need him and, given the right amount of care and equipment, he could return there. He has been offered a place in a Care Home as, so far, the responsible department will not agree to fund his return home.
In the 1980s I was employed as a senior practitioner in a London Borough Social Services Department and was privileged to be involved in one of the first Community Care Projects (now Social Care).
Barbara was 42 years of age and her daughter was 11 years old when I introduced myself to them. Barbara developed Multiple Sclerosis soon after the birth of her daughter Janice. At 42 she was now in a wheelchair, paralysed from the neck down. The local, well known hospital and social services department had agreed that, together with family agreement, we would keep this family together at home and do everything possible to meet their needs and ensure that they had as high a quality of life as possible. Barbara agreed to allow the local authority Housing Department to purchase her house and in return the house would be fully adapted and equipped for Barbara’s needs. On Barbara’s death, Janice would remain in the house for as long as she wished and accommodation would be provided when she was ready to move. The property would then be offered to a disabled person. The house was equipped with ramps, a lift, hospital pressure bed, wheelchair-height surfaces and Possum board with which, with a blow-suck pipe and codes, Barbara could open the front door, turn the TV and radio on and off and make phone calls. Trades people were given a codeword for entry on the speaker system on the front door (the codeword was the name of the cat, an important family member).
The first Case Conference I attended about the family was quite daunting - Hospital Consultant, the GP, Physiotherapist, 2 District Nurses, the Assistant Director of Aids and Adaptations, 5 Social Services Department Community Care Workers from the area office in the family’s locality and myself (now key worker to Barbara from the Family Placement Unit). All aspects of Barbara’s life were discussed; a main concern being the continuing care of her daughter, Janice - was it actually possible for Barbara to continue caring for her daughter?
I became familiar with these meetings and learned much from the way we worked together across departmental boundaries. My main task was now to introduce the idea of attaching a Foster Family to Barbara and Janice with a view to offering Janice days, and maybe weekends, with an active family who would grow to understand her mother’s circumstances and not take over Barbara’s role of mother. Because of her paralysis, Barbara had, in lots of ways, lost control over her life and it was important that all those involved remembered this. An independent, courageous spirited person with a great sense of humour is how I would describe this mum, but she did not like change, like most of us! My proposal about a foster family did not go down well with Barbara and Janice but they did agree to a meeting. So foster mum, the family and I met one evening; it was a bit tense at first but both families were local to the area and things they had in common began to emerge. The breakthrough came when Barbara and foster mum realised that they knew each other from way back. Barbara was now happy while Janice was, understandably, reluctant. Over time, foster mum, dad and their young daughter made a good and close relationship with Janice - they were a bit quirky (ducks in a small pond in a small garden)! It worked - days out, holidays and fun gave Janice some balance in her life and this foster family supported her over many years.
Day to day care of Barbara continued, as did co-operation across departments. Problems did occur - Janice’s teenage outbursts, Barbara’s frustrations at her lack of control over her life - but there were many good times too - sharing jokes, enjoying the cat’s antics, watching the wedding of Princess Diane and Prince Charles together with a glass of wine, making the best of things. In Barbara’s words, “You’ve got to get the most out of each day!” I always felt lifted after I visited her. That was not my object; it was what Barbara gave to me.
The main outcomes of this joint work were
1) that different disciplines worked together
2) District Nurses made breakthroughs in the care of serious bedsores
3) the benefits of long-term physiotherapy were proved beneficial in the treatment of chronic MS
4) the financial resources were available
One of my more difficult tasks was to talk with Barbara about her death, and also with Janice. One of the carers had, by now, made a close bond with Janice, so she now had two families as support.
Barbara died when she was 48 years old. I had left the department not long before and returned for Janice and to attend the funeral. An amazing service took place with many attending. Great tributes were made by staff from departments and by friends. Barbara’s strength and courage shone through it all and it was there in Janice as she coped with her loss.
As I reflect back on this case and look at the values held, the family’s needs were uppermost, professionals were given the freedom to work flexibly and we were trusted. We had ‘targets’, to use a modern word, but they were not used in the way they are today. We had the finance. Could we have that now? Not in the same way perhaps, but we could change our priorities; we can choose to spend money in different ways. All the services I speak of were ‘in house’ with no shareholders.
As a Christian, I believe that we should aim for the best for those in need around us. We are not imaginative or ambitious enough on behalf of others. We need to be encouraged and allowed to aim high!
A final word - I stayed in touch with Janice. Her only other relative was her granddad who died a few years after her mother. The two supporting families supported her until they died but leaving her with a foster sister (now sister) who remains a close friend and Janice is a welcome aunt to her daughter.
However well-intentioned all the professionals were, we were a great intrusion into this young person’s life and at times it made her very angry. Imagine numerous people in and out of your home day and night!
Three years ago Janice visited us. She had reflected upon it all - it now made sense and she was more than OK with it all.
She is now an independent, lovely person, working in pharmaceuticals and with close bonds with her foster sister and family.
What would have happened if we had taken Janice into Care and not kept her with her mother?
[Names have been changed.]