Over the past few weeks I have kept intending to write a more personal perspective of what the current ‘cuts’ to services do to families on an emotional level. Having read the Guardian article (http://www.theguardian.com/politics/2015/dec/06/council-tax-offset-care-cuts-widen-gap-rich-and-poor-kings-fund) and taken part in a Twitter conversation (@MarkNeary1, @GeorgeJulian) I decided to put my situation out in the open and talk about what the current cuts are doing to me as a carer.
For those of you who do not know me personally or virtually I am a carer for two people. I have cared for my daughter, Erica for 33 years. She has profound and multiple impairments and complex health needs – she lives at home and her support is funded from Continuing Health Care. My daughter’s health has deteriorated and been problematic over the past few years and as she cannot communicate verbally we have to guess at the problems and try out various solutions until we find the answer. She has indicated that she is in pain when she eats – for the past 2 years and although we have tried various options we have not yet found the solution. So Erica lives with the pain and we live with the emotional stress of hearing her shouting and being unable to stop the pain. . I also support my mother who lives in a nearby town in residential care. She has chronic respiratory failure and in the last few months has developed a heart condition and kidney problems. Both Erica and my mother would be described as being in the final phase of their lives – neither of them have a ‘condition’ which will end their lives so we live with the uncertainty of not knowing how long this phase will be.
Over the years I have found ways of living with the levels of stress and emotional strain that being a carer for these two people involves. For those of you who know me you will know that I am a positive person who will use humour to deflect difficult situations. I have found ways to build in ‘me’ days which keep me sane and I am active as a carer both locally and nationally as that helps make sense of my experience. But over the past few months I have hit rock bottom and needed to refer myself for therapy (at a cost to the health service) as the last straw broke me emotionally (excuse the mixed metaphor).
What I did not need - was to discover that one of Erica’s services would be closing due to the cuts in local authority funding. Erica receives a home care service – someone comes to get her up in the morning and someone puts her to bed at night – the team – Community Support Team (CST) – is a local authority in-house team. The reason we use a homecare service rather than employ our own PA’s for these calls is because they are relatively short calls (an hour in the morning and half-an hour in the evening) and we struggle to recruit PA’s to do such short calls. The small team of people who carry out this work are trained in giving meds via a tube, trained in moving and handling, understand her non-verbal communication and most of all have over time built up a close relationship with her and with us. Initially we worked hard to get a good, safe and consistent service – which we have now had for a number of years.
So what happened? For the past few years I, like so many other carers and disabled people around the country started hearing my city council talk about ‘delivering adult social care differently’ . It sounded like another slogan – perhaps I should have taken it more seriously but as a carer I have learnt to block out things that I don’t think I need to worry about – yet. I attended a consultation event in the early stages where not much was agreed and we were told that there would be further consultation. I came away thinking – some local authority services will close – but as CST was the only in-house service we use – and I consider it as an excellent quality service I did not believe, once we were consulted it would be closed. So I put it on the back-boiler in my mind.
Then over the Summer this year we received a number of letters saying that adult social care will be delivered differently and ‘someone’ would be coming to consult us. By September when no-one had turned up I emailed senior people in the City Council and started making a noise at the Learning Disability Partnership Board. Very soon after that we received a letter stating that the City Council was selecting 12 providers to provide all services for adults across the city, on a framework (introduced to a new jargon term in the world of commissioning). I still naively thought CST would survive – but started asking the workers who came to do Erica’s calls if they knew if CST had applied to be on the ‘framework’. It was at this point I started to worry and eventually one of the workers told me that they had all been called to a meeting and told the service was closing – in just over a month’s time.
I then went in to a total tail-spin – emailed everyone I knew and emotionally it was the last straw and I became very depressed. Why – with hind-sight I should have guessed that this would happen – central government policy is very much about local authorities becoming commissioners of services rather than providers of services. Services have been cut, regardless of whether they are good, bad or indifferent – they are cut because that is government rhetoric and it is the only way the local authorities can survive financially. I naively held on to the belief that if a service is ‘good’ it will survive and when it did not I felt I had let my daughter down in not protecting her and doing something sooner – rationally not sure I could have done anything – but rationality does not come into it.
I have now spent the last couple of months meeting managers, reading impact assessments and service specifications responding to inaccuracies in the way information is presented and generally fighting Erica’s corner. This is time consuming and emotionally draining. I often wonder if politicians or professionals working in services think about the emotional cost of their policies? It is so easy to rationalise why these things need to be done in the ‘name of progress and change’. I read an article in our local paper based on an interview with the deputy council leader explaining that the Council had to reduce services in order to save £7m – at no point did he talk about the emotional cost to staff or people who use their services and their families.
I guess I don’t blame the local authority for the cuts – I know both the director of adult social care and the lead member for social care (@tigerbonham @hel1958) and neither of them would chose to do what the City Council is having to do. However, I think the way the cuts have been implemented locally leaves a lot to be desired. My focus now is, having accepted this service is closing, to slow down the process and ensure that the transition takes place in the best possible way for my daughter.
I have written this post from my perspective as a carer – because of the emotional toll that the cuts have had on my life and well-being. I cannot begin to know what impact the service closure will have on my daughter and I need to accept that she has no way of telling me that directly. She has got to know and trust a small team of people who she sees most days of the week. Changing to a new service will be for her as big a change as she went through when she moved from children to adult services. She will lose so much experience, skill and care – so as a parent I need to respond by asking David Cameron – is balancing your budget worth more than ensuring that vulnerable people can be supported to live lives with a sense of dignity and well being?