Family Carers in Eastern Cheshire CCG area – 4500 known about – and increasing
1 Carers have a double need for health care – yet they also have a double or triple problem when trying to access it. Visiting the GP is bad enough when there is someone left at home, who finds it difficult – or whom it would be unsafe -if they were left to cope alone. Yet bringing that person along creates many more problems. Into this must be factored the age, illness and infirmity of the carer.
2 Across the services, across Eastern Cheshire and further afield, family carers are involved in their own and someone else’s health and care; needing to factor in time frames and travel plans which single individuals do not need to consider
3 When acting as a full time carer, the family carer works 24 hours a day, 365 days a year with risible or mythical respite. This goes on for as long as the family carer remains upright.. with so-called ‘help’ agencies remaining firmly in their comfortable seats.. and knowingly allowing such treatment to continue.
4 They cope with physical and mental sickness and faecal incontinence, in homes ill equipped for dealing with such things – with wall to wall carpets how can they bleach and remove the stink? They lose their friends being too busy, too exhausted , too ashamed to invite anyone in. They find floors covered – smelling their way about and trying to locate, yet again the source of the stink, finding continence knickers being washed in the sink and the bath, and hung on hot radiators.. and this leaves them feeling sick and unable to eat.
5 They make appointments and spend four, five six hours getting the person for whom they care ready, only to find that the surgery is busy, so they wait as the person they care for spits all over the floor, needs the lavatory time after time and still no-one has seen them.
6 They face the severe problems of health and care professionals, often at high levels, who – uncomprehendingly – will deliberately try to override various Guardianships which have been fought into place to protect the vulnerable person.
7 Going to the hospital for blood tests or to see dementia specialists, involves very public difficulties. Keeping the sick child amused might be easy at home, but in public spaces it becomes impossible, especially when the child is autistic, or in pain or the hospital has overwhelmingly colourful waiting areas, giving sensory overload, when the downs syndrome child might welcome such brightness..
8 Bigger children – particularly those with autism – needing great help can be violent if upset and unable to cope, their actions upset others who are unaware of their problems and their causes.
9 Seeing a parent frogmarching an autistic child out of a space in which that child’s behaviour rapidly becomes uncontrollable – and possibly a danger to other, smaller children in the space – is upsetting for all.
10 And the parent carer has to cope with worry, guilt, and the regular, heavy controlling work and the uncomprehending tut-tutting of strangers, as well as regular bruising and threats from a much loved child who might never, mentally grow up.
11 The sheer depression brought to parents of such children, scars every reaction the parent carer might have to any other member of the public. It places the parent carer at risk, since often social workers and health professionals look on uncomprehendingly at he the wrongly perceived ‘dangerous’ parent.. who is in fact desperate to ensure that their child is kept safe, from systems which are not designed to help, from ‘professionals’ who remain too ignorant to understand the need for help, who find that in the rush of life they do not want to help.. because no-one will take the time and trouble to understand the special difficulties which this child and this parent carer face.
12 Yet the child must go to school, in a system which constantly tries to deny the child the education which his or her mental and physical difficulties need, in order to allow the child to thrive. Such treatment is isolating to them, driving them away from sources of help, depriving the parent carer of helpful information, which might be otherwise readily available.
13 In respect of Carers, I would like to pick up child sexual abuse, particularly since it seems to be endemic across England. What is this CCG doing about protecting children?
14 Do their parent carers also need protection from prosecution or arrest, for asking for help?
15 Which of the professional employees, providing services commissioned by this CCG have noticed and acted upon suspicions, or noticed and not acted upon suspicions, in respect of child sexual abuse? What duty of care is it established that they have?
16 What actual respite facilities are available in each local area within ECCCG area, so that family carers can access assessment, day care, overnight respite care, and holiday respite care to protect their own mental and physical health? By law, no paid employee would be left in so isolated a place.
17 Where is the necessary carers health assessment care, which might protect the health and life of the family carer?
18 If the answer, as I suspect is ‘there is none’, what will ECCCG now do to provide such support to the family carer? Assessment is a legal right.. but there is no legal right to the help which that assessment clearly shows is necessary. That is depressing, insulting and of no help to the family carer or to the person for whose needs they care. Where such obvious health assessments remain with social care, they are used as a political football. Family carers have no time to take up sport in order to become the football.
19 Given that a charity cannot provide a full ‘service’ what is ECCCG doing to ensure that the work of charities is not factored in when essential health and care services are needed?
20 Does ECCCG recognise that it has a ‘duty of care’ to its most vulnerable, fully paid up customers, which include the young, the old, the ill, the disabled and the increasingly large cohort of family carers?
21 What can we do to ensure that we meet the needs which are demonstrated to exist, so this group, actually gets the care which ECCCG has a duty to provide?
22 What blocks exist within NHS England, which might prevent ECCCG providing an adequate service, which gives full consideration to the overworked family carer and fully fulfils the ‘duty of care’?
23 Much is spoken about keeping in good health, so that systems do not become overloaded. How can ECCCG and Health Voice help to persuade NHS England to bring those very closely allied health matters, dementia health and family carers’ health back within the ‘duty of care’ of the NHS?
24 What will exists within ECCCG and Health Voice, to tackle this already strong and rapidly growing discrepancy in care?
25 Which other agencies are already on board, or can be brought on board to aid ECCCG and Health Voice to achieve a return to the NHS of such health matters as dementia and family carers’ health needs, given the demonstrable lack of will to help by the former social care sector?
26 It was pointed out at a recent meeting I attended, that it is ‘political will’ which states that adversity and paucity of funding should exist within the NHS, that the NHS should lose many of its former ‘services’ to the commercial sector, that the NHS had to lose the health care of those with dementia, and of family carers – in this area – to the failing political will of unbalanced local authorities, which seem to feel that no ‘duty of care exists, where a ‘chickenfeed’ can be given – short term – to charities, which also will have no duty of care beyond the piffling amount of funding, which is – short term – dribbled into their coffers. Family carers and their charges are not ‘charity cases’. The NHS was set up to stop such miserable treatment.
27 I believe that to survive intact , healthy and vital in the 21st century, we need a plan of action which will protect our weakest, including our young and older family carers, our rising army of dementia sufferers and our ill and disabled children and adults. And remember that the lives of that whole cohort – including that of the family carer – depend heavily upon the health care and support received by the family carer.
28 As a country, we must stop relying on the slave labour, which has been forced upon the untrained, unpaid – and often unwilling – family carer, whose life and health are put on hold, depriving them of sleep, health, money, pension right, friends, social life, transport and peace of mind. In the case of dementia care, family carers save the National Health Service between £900 and £1200 per week, which is the cost of Nursing home fees.
29 We must begin to understand and adequately support the family carer, whose work lifts an enormous financial-cost burden from the NHS – and the support of whom would by comparison, be relatively cheap to fund – and the expertise of whom would continue to greatly benefit the entire country, in financial gain and humanitarian goal.
30 As a nation we pay no interest, no cash and no honour to the family carer.. and this has now to stop. Even the family carer of vigorously healthy children is so undervalued that the job of rearing a family is tarnished by a public perception of worthlessness.
31 What can members of Health Voice and ECCCG suggest which might prevent the isolation and removal of right to exist, from the family carer?
32 How can Health Voice and ECCCG persuade Cheshire East Council and East Cheshire NHS Trust to get behind the family carer in all the demonstrated need, and offer the very necessary local health support which will save this area a large amount of money?
33 With the steady and increasing loss of many former respite facilities, how can Eastern Cheshire CCG stop the erosion of those services which might be left, and build upon the help needed to support the family carer?
34 How many local area respite beds are currently available for the NHS funded use of family carers? Where are they? Who funds them?
35 What plans are being made to increase to a supportive level, dedicated respite facilities in local areas?
36 What will it cost us all, if large numbers of the old ill and disabled are forced into full time NHS funded care? Why should any person who wishes to live in their own home, be forced into a care home, no matter how good and caring, only for the reason of lack of support, for that person to live in their own familiar surroundings and within their own community? If we lose our own sense of self and worth, no matter how well cared for, what is the point of existence?
37 What right does the person with dementia, or autism, or any other ill have, to remain comfortably within their own familiar home? How can ‘empowerment’ exist where such enforced eviction into full time care exists?
38 What right does the family carer have to respite, holidays, time off, a night’s sleep, a pension, a home – and peace of mind?
39 Who sets the agenda on our lives – and why does that agenda work so harshly towards those who are forced to work the hours of slave labour, with vanishingly small hopes of preferment or release?
40 When can family carers expect decent and acceptable working conditions, where they can sleep, live, and expect to be properly valued for their work within the health economy – which in any case, goes hand in hand with the trashing and overriding of their own hopes for present and the future?
41 This is a request for support from ECCCG and Health Voice to gain the reprovision of our essential services at The Tatton Intermediate Care Ward and Bexton Court dementia day, respite and assessment centre, so that they can serve us in our own local area.
42 It is also a request for General Practitioner support, into Cheshire East Council, to enable Hollins View, in Macclesfield, Mount View in Congleton and Lincoln House in Crewe to remain open so that their local service provision can remain.
43 With the closure of two commercial Nursing Care homes in Macclesfield and Congleton, removing 47 beds, from the finite small number across Eastern Cheshire, we must keep some leeway within the system, so that the family carer’s need for health respite can be provided for.
44 We must fund such health placements as an NHS right to family carers, so that they have a definite period of two or three weeks per year of respite, which can be taken to suit the family carer’s needs, in which the care provided will be either in the local area, or in the home if that is preferable.
45 Additionally, where it is shown to be necessary, the family carer must have the right to overnight respite, so that a good night’s sleep is made a part of that health package.
46 If we don’t look after our family carers, giving them rights and dignity, many will give up. That will be very expensive. Family carers must not be sent begging to charities, but must have their health needs – and the health needs of those for whom they care – treated in a non-discriminatory manner, as a ‘right’.
47 As one man said, during a joint CCG meeting at Middlewich. Who is telling us that there is not enough money? Why have they decided that we must face austerity within our fully paid for National Health Service?