Family Carers – in Eastern Cheshire – and elsewhere

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?

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Recycling up and round the spiral goes Dame Jo Williams. Why? Has somebody been sold ‘a pup’?

It seems that the financial cost (£1,500,00, I believe?) and the hard work of a very large number of volunteers and employees is about to be ‘brought to dust’, by the appointment of (‘charming’) Dame Jo Williams as ‘Independent Chair’ of Eastern Cheshire’s Caring Together programme, which is being announced in the press release below.

The question is: Who knew about Dame Jo Williams’, Care Quality Commission and Parliamentary Health Select Committee background, prior to this strange appointment?

Do read the Parliamentary Health Select Committee (corrected) Transcript of 11 September 2012.

From Question 83, this evidence brought out by the Committee becomes quite startling. And yet this is the woman who has been appointed as the ‘Independent Chair’ – and figurehead – of the whole Caring Together Programme? If there is a will to further remove the already shaky trust of people across Cheshire East, perhaps it will succeed?.

Dame Jo Williams was the Chair of CQC during the time when desperate friends and relatives were constantly asking for help from the CQC, which I believe was consistently refused. I believe that this refusal was seen to be so desperately wrong that CQC Lay Board Member, Kay Sheldon, felt forced to blow the whistle on her own organization and went to give evidence at the Mid Staffs Hospital enquiry, which has since stated that hundreds of old people died unnecessarily and in deep misery, during their dreadful treatment at the hands of Mid Staffs Hospital Trust.

It is reported that Dame Jo Williams wrote urgently to Andrew Lansley asking that Kay Sheldon be removed from the Board of CQC.. but this was eventually refused

You will see from the corrected parliamentary document, that the mental health of whistle-blowing CQC Board Lay Member, Kay Sheldon was deliberately – and very publicly – maligned by Dame Jo Williams, during the Parliamentary Health Select Committee hearing (11Sept2012)which is known to meet in public, posting its documents publicly online.

Also of course, Dame Jo Williams was the Chair at the time when relatives of those assaulted, learning disabled adults at Winterbourne View were begging for help, and the CQC seems to have had no procedure in place to help or investigate there either.. being ‘busy about its own affairs’… whatever they were.

And Dame Jo Williams was Chair of CQC when desperate parents were begging for help during the Morecambe Bay Hospitals ‘baby deaths’ scandal, when it is stated that 16 babies died quite unnecessarily.

This is all raised in the Parliamentary document.

Was Dame Jo Williams forced to resign from CQC? She was certainly forced to apologise during the Parliamentary Health Select Committee Hearing.. but not until after the reputational damage to her Board colleague was openly achieved.


“PRESS RELEASE – early May 2014
From: Portz, Michael (MAN-WSW) []
Subject: Caring Together appoints Dame Jo Williams as new Independent Chair
Caring Together appoints Dame Jo Williams as new Independent Chair

 Caring Together – a new programme aiming to improve the way health and social care is delivered in Eastern Cheshire – has today appointed Dame Jo Williams as its new Independent Chair.

The Independent Chair’s role is to provide impartial and objective advice to the programme, particularly as new health and social care models are created using feedback from people across Eastern Cheshire. The new models will  change the way care services are provided in the region and  the Chair will ensure that patients’ needs are properly taken into account at all times.

Following a thorough recruitment and assessment process, the Caring Together Board has appointed Dame Jo because of her exemplary record standing up for care users and partnership work. She replaces Dame Ruth Carnall who has served as interim Independent Chair since August 2013.

Dame Jo was previously chairman of the Care Quality Commission – the national watchdog set up to govern care services in the UK. Before that, she was the chief executive of the learning disability organisation Mencap.

She was appointed Dame Commander of the Order of the British Empire (DBE) in the 2007 New Year Honours for “services to people with learning disabilities”.

Dame Jo will formally take up her post on 1st May 2014.

Dr Paul Bowen, GP and Clinical Chair of NHS Eastern Cheshire Clinical Commissioning Group, said:

“The CCG is delighted that Dame Jo will chair the Caring Together Executive board. She brings with her significant experience of the health service, and has demonstrated commitment and leadership at many levels. In order to co-design a collaborative, high quality care system, her independence and overview will be vital. I very much look forward to working with her. 

“I would like to thank Dame Ruth Carnall for the outstanding work she has carried out as our interim Independent Chair and wish her all the best for the future.”

Dame Ruth Carnall, outgoing Independent Chair of Caring Together, said:

“The role of the Independent Chair is crucial to ensuring what matters, happens. This programme is about changing how health and social care services respond to the needs of patients and as the outgoing and interim chair I believe we have made a good start. I know that Dame Jo’s skills and experience will help make Caring Together the success patients deserve.”

Dame Jo Williams, Independent Chair, Caring Together, said:

“I am delighted to have this opportunity to serve the people of Eastern Cheshire.  I look forward to playing my part in the development of health and social care services”.

Bill Swann, Lay Member for Public & Patient Involvement on the NHS East Cheshire CCG Governing Body, and the Patient-Carer Representative on the Caring Together Board, said:

“Dame Jo’s appointment is a very welcome addition to the Caring Together programme. We need to ensure patients’ experiences are taken into account as we co-design new services and she will be a significant ally in this.”


Well.. that’s what it says. So how much did the Selection and Appointments Group know about the Parliamentary past of Dame Jo Williams, before feeling that she was ‘the ideal candidate’?

This begs the question: ‘The ideal candidate for what?

Paul Bowen states: “I know that Dame Jo’s skills and experience will help make Caring Together the success patients deserve.”

Another question might be: What is it thought that the patients of Eastern Cheshire CCG area deserve?

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That is the title – having tried various others – because it fits the theme of the proposed words.

All through our lives we come across those who can loosely be lumped together as weazels. (Apologies to real real weasels, not one of which has ever crossed my path.)

Weazel words seem so readily to slither, drip, spit or froth, from the lips of those we pay to do our public bidding. .and yet they take our money.

That is part of our problem. We pay them and then allow them to do as they please. Gentle masters indeed. Perhaps foolhardy Masters? Or perhaps we become servants to those whom we pay?

If the latter is the case, we are probably (ill) educated to ‘be stupid’. Otherwise why would we allow our public servants to abrogate their responsibility?

Another step along the slimy road brings us to gongs. We issue ‘gongs’ to those who seem to be working on their own account.. and taking large chunks of our money to do that. We give them OBE, or QPM, or various other proofs of their weazely, malign status, and on occasion they receive knighthoods, or become Barons or Lords.

Well, at least that picks them out for who they are.. then we can try to keep an eye on them in future, whilst also keeping well away from their spheres of influence. (Easier said than done? Perhaps!)

The purpose of this blog is to consider the actions of such people.. and to discuss ways of highlighting and/or preventing the worst of their excesses


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How many of the organisations which we are forced to support, also support us?

Blue Sky - Puffy Clouds

Sailing above corruption

This blog has the purpose of exposing the actions of a large range of public officials
to whose machinations I have been privy.

They range
from police to Home Office to Coroners to Ministry of Justice
from NHS to Secretary of State for Health
from social workers to GSCC
from solicitors to Law Society
from GP to GMC to NMC to HCC to PHSO
and the ‘etceteras’ move on into the distance

And … I am getting pretty fed up with the stench of their actions – at our expense
Trust in any public official is at a very low ebb

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