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On the second of April this year (2018) I had my annual Carer’s assessment (under the new Care Act 2018). The Carer’s assessment is not a test of our ability to care but to see what needs we as individuals have in order that we may lead a better life in view of the caring burden. My assessor was very proficient at teasing the required information from me without the need to suggest answers himself so this was all my own input. The assessment was much the same format as previous assessments but with a few more questions. The process took about ninety minutes but it must be remembered that this was a first for the assessor as well as for me. So nothing to fear from the new assessment.
Well what did I get out of it this time? I am sorry to say not much, ….oh I got a cheque for £150 but throwing money at me is not the answer to my problems. Talking later to my assessor about this he was as disappointed as me that no funding provision had been made for the purpose of supporting carers under the provisions of the act. What I did not get was a written care plan which I have received in other years. So although I will still advocate that all carers have a Carers Assessment, don’t expect too much to be achieved by it any more….. Since writing this my assessor has moved to a new place. I have also spoken to Nottinghamshire County Council adult social services (a lady came to speak at a Carers’ Council open meeting on this subject) and she advised me to get a “Care and Support Assessment” for the person I am caring for. I did this but late June now and am still waiting for a response but not holding my breath. So as usual its milk and honey tomorrow for unpaid carers folks. But “we think you're very special and do a wonderful job”. Later ……. On 14th of August we received a visit from a social worker in response to my request for a care and support assessment. This support is available for a maximum of twelve weeks. So you see everything comes to he who waits, at most twelve weeks of support. This is not what I expected when the prime minister, you know, what’s is name, Boris Jones, was telling us how important carers are. I shall write again and let you know how this works out. Much Later ……..26th September 2019 Had my carer’s assessment review by telephone today, only about one year late. Doing this over the phone is a bit soulless although my role hasn’t changed much in two years and will get £150.00 to help me get some respite probably for the last time before the County Council funding review for carers is implemented. The County Council know my feelings about this. I don’t need their money, what I do need is constructed occupational therapy at least once a week, for the person I care for.
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 One day I went to a Mind consultation group about the experience of carers. They wanted us to describe visually our experience of caring for our loved one if we wanted to. I thought about my son’s entry into the mental health hospital system where he stayed for a long time after the very bad psychotic episode in 1998 (diagnosed a long time later as part of a Bipolar Disorder). I wanted to paint something so they gave me a blank piece of paper with a drawing of a footprint on it.
I started from the heel because at the beginning my wife and I felt as though we were being ground into the ground by the tremendous shock of what happened to our son and what we were going through. It was a very black and depressing time getting used to visiting regimes in a secure hospital environment. There were days of ‘lightning (black and red squiggles) with occasional green patches when he was calm and we felt hope for the future. Months later as medication began to take effect we saw both periods of sustained mania and periods of coming to terms with what had happened and an emerging view of the future. By the mid-sole of the footprint there were alternate periods of depression, mania and calmness when he began to write poetry about his experience or realised what life may be have in store for him. He was not thinking about our experience and he never really has so its was hard for us to support him from afar on a daily basis but as the breadth of experience he was having (and we were having of the system he was in) grew in many directions, often causing us great frustration as the months and years went by. The picture at the toes end of the footprint showed less psychotic behaviour by our son and days when he got leave and went running; started to play the guitar or we were able to go out with him, gave him pleasure. The ‘grass’ got greener and his freedom grew larger and we all began to see a discharge from hospital, albeit conditional, become near to realisation. The experience changed my life as I became immersed in the mental health system and health in general. Our son has recovered, with a well developed medication regime, to the extent he now runs his own craft business, has a house he does not have to worry about and a future he and we never felt was coming. He lost many years of his life but we all grew in the process.  What do you do when your son is up against a brick wall? Psychiatrists and therapists want him to bare his soul and accuse him of ‘lack of insight’ because he does not want to go there. He cannot understand why they keep wanting him to ‘engage’ with them to discuss the problems they think he has not considered which represent ‘risks’. It seems to be an insular process they want him to follow, such as role playing what he is going to say about his experiences when he meets a girl, They call it ‘disclosure’. They think a girl has a right to know. Perhaps they do but as human beings we all have instincts which help us to deal with such situations when we come to them. He knows love should not have boundaries caused by withholding fears, but how can you act out being in that situation. We have come up with a different approach which ‘they’ actually think is a good idea. We wrote down the things we know our son wants out of life (outcomes), and then we wrote down the things that might possibly hold him back (risks), and then the things he, or those supporting him, could do to remove or reduce the impact of these factors (risk management). When we showed this piece of paper to our son he said “this is the first time I have seen it written this way and I can see what you and they are saying”. Our son has always seen writing things down as helpful. Then he talked about how he sees things, and plans to cope with the ‘risks’ and is already doing so in some areas. Later he showed the piece of paper at his ward round and they nodded their heads and he said he was prepared to talk about these things, particularly about having an Advanced Statement (what he would like to happen if things go wrong and he needs help). So perhaps the brick wall is coming down. We hope so – it’s a start. |