Our on-line meeting of Dementia Conversations was an emotional sharing: A had been supported in her submission for NHS Continuing Care funding for her husband D. Working through the decision tool, the review team had given scores which should have resulted in the award of the funding but the nurse and social work assessors had overridden the tool and the score, saying that in their views D’s condition is currently stable – and there will be no award. It is clear that the tool is designed to support consistent decision making and that the decision is made by the team, taking the results of scores on this, and all other relevant matters – but it beggars belief that this has been the outcome. We know how long D and A have been living with dementia, how severe his impairments are (as reflected in his cores on the decisions tool), how complex the past year has been with repeated admissions to hospital and near-death experiences. Rejection of the funding is felt as a denial and rejection of the suffering that D and his family are enduring NHS continuing healthcare decision support tool - GOV.UK (www.gov.uk)
A is being supported in an appeal by a number of agencies who know D and his condition. At present the authorities are saying that they will not make the papers available to allow an informed appeal. How can they do that?
And B shared some details of a prolonged and painful struggle to obtain appropriate care for a family member who is old, frail and has multiple pathologies. Discharged from hospital precipitately and without the benefit of a home assessment, it fell to family to put together necessary social care. The District Nursing service declared it did not have staff to attend to his leg ulcer – there would be a 5 week wait. Unfit to drive, his only option was to drive to a local clinic – he was asked to bring with him a bowl so that his leg and ulcer could be cleaned. The clinic then retained the bowl and require that he returns – by his own devices – for further care and treatment. He has received no comprehensive assessment or consideration and explanation of his condition. There is no multi-disciplinary, multi-agency care and treatment plan that he or his family can understand.
So we wonder: ‘What is going on?’
We reflected that services were better and better coordinated in the past – 1970s, 1980s, 1990s. Britain gave the world Geriatric Medicine – and the sort of challenges we are now seeing being dealt with so badly, were its raison d’etre and bread and butter. It is bewildering and infuriating that what was found has been so casually tossed away.
Time for more campaigning
At base is a lack of respect for individuals and families. We heard about Kate Granger, a young Yorkshire Geriatrician, who became ill with cancer and found the way that she was treated as a patient by professionals so disturbing that she established a campaign toward more compassionate care: ‘Hello – My name is’. The words of a porter called Brian – who gave her respect and hope. Hello My Name Is | A campaign for more compassionate care
Out of adversity, good things can grow.
C pointed out that not everything is bad – he cites individuals and organisations which have helped him with his own health problems, and in his role of carer for E who lives with dementia of ten year’s standing. His words are true and encourage us to feel that there are the resources, understanding and attitudes which can bring us back to a stronger, surer pattern of care from the current patchwork of sound and threadbare.