Carer's Experience Medical Neglect

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Page & Article modified July 2012.

At the date (May 2006) of modification of Excarex, the position of carers within this United Kingdom remained similar to that which I described in Article 1. The disgraceful treatment of them continued and they still saved the tax payer thousands of millions of pounds. Shortly after my mother's death in 1998, the figure that was being stated was approximately "fifty three thousand million pounds". A few years ago I "Googled" the query and one result returned the answer of "eighty seven thousand million pounds". The figures were calculated on the pricing of every care task that carers carry out. If society had to face that responsibility of covering the generally unrecognised care that carers do, then society would not know that which had hit it. The taxation that would be necessary for the state to provide the same care would be huge and failure to implement such taxation would leave the uncared for to die and rot in their homes. A truly horrific scenario!!!!!!

One was forced to wonder in May 2006, and again in 2008 with the much vaunted but worthy Scottish Executive's free care for the elderly being under question, as to what would happen to the elderly and any future problems that could be dumped in their laps and those of their carers.

November 2004

Dear Readers,

In this article, I shall present some details of the position of caring institutions within the United Kingdom, and how, for all their worthy achievements on behalf of carers over the past 37 years, they still face an uphill battle against society and State. In doing so, I would like to make it clear that I am not speaking on behalf of any registered charity in any official capacity. I speak as an ex-carer who is aware of the fact that shortcomings that existed during my time as a carer are still extant and the improvements for carers are slow in arriving. I shall also give examples of the trials and troubles that carers experience in this UK by presenting details regarding two cases, namely Mr. Rob Kay and his family in Scotland and the Perkins family in South Wales, who I referred to in my first article. Having exchanged correspondence with both of them, I have their agreement to publish their details within my article. Furthermore, the plight of domestic carers and caring institutions extends to professional carers such as nurses and doctors who find themselves on the receiving end of managerial incompetence and bullying, and the stresses caused to them reflects back on the patients and their relatives.

First, I shall give my attention to the official bodies, which act on behalf of carers. There are numerous caring charitable organisations within the UK, but it is safe to say that the largest charity acting on behalf of carers generally is Carers National Association (now Carers UK) (Reference. 01). For those among you, who know little, if anything, of such UK organisations, an historical portrait of CNA's origins and some notable achievements over the years before and after its founding is appropriate. The failure of politicians to honour the unquestionable ethics enshrined in the concepts of such achievements can be found revealed in all the petty conflicting restrictions with which they surround the basic ideas. Over the period detailed below the politicians generally did a great deal less for carers than CNA, which brought about numerous advancements on behalf of carers.

CNA came into existence in 1988 when two care organisations merged. They were the National Council for the Single Woman and her Dependants (later renamed the National Council for Carers and their Elderly Dependants), founded in 1963 by the Reverend Mary Webster, and the Association of Carers that had been formed in 1981 under Judith Oliver. From 1988 their combined forces were applied to bringing carers need of recognition to the attention of government, political parties and the media.

Due to the National Council, tax concessions for carers were achieved in 1967 and pension credits for women who had had to give up work to care. In 1971, Attendance Allowance was introduced; payable to those who were in need of another person's attendance to ensure their safety and to provide certain care needs. In 1975, Invalid Care Allowance (ICA) was introduced which was and is paid directly to carers, but at first it was only paid to single women and men. Another person must be in receipt of Attendance Allowance before ICA can be granted. It needed a European Court of Justice Ruling, in a test case, for this to be extended to married women in 1985/86. It is hardly a golden handshake allowance and is, in point of fact, one of the lowest benefits payable. At present, the name of the allowance has been changed to Carers Allowance and the basic guide figure is 43.15p, although individual circumstances can affect the amount actually paid. There are changes being made which are active from April 2003, with the needed removal of the age limit for applying, but the restrictions due to overlapping benefit rules still apply. There also still remains the anomaly that a carer cannot receive their old age pension, which they have been contributing to all of their working lives, and also still receive ICA, which they may be equally entitled to. This is an injustice that remains unaddressed. Regarding this, please see the references (Refs. 02/03/04/05/06/07). Like other supposed benefits it has petty and unfeeling restrictions, as follows:-

When a carer is in the position of caring for more than one person they will still only receive one payment of ICA, and they will still have to show that they care for one of those persons for a minimum of 35 hours in a week. Failure to satisfy these conditions will mean that no ICA will be payable. To a person caring for two people it is little better than slave wages, when it is remembered that carers are on call in a very permanent sense. There is rarely, if ever, a clocking-off time when the carer hands over to another person and goes home in an emotionally switched off frame of mind. It is truly a pittance payment. Just before the last of the Thatcherist Tory Party, the Tories attacked carers by reducing the backdating of ICA from 12 months to 3. Beforehand, ICA could be backdated one year and this extra payment was of great worth to carers who had been forced by circumstances to give up work to care, hence losing career, income, promotional advancements, pension rights and, so often, their social lives. It was reported in the March 1997 issue of the CNA magazine, "The Carer", prior to the Labour Election victory of 1997, that Anthony Blair, MP, had said at a CNA book launch....

"It is natural that a husband or wife, a loving son or daughter, or another relative or friend should want to play their role as a carer in supporting a close relative in need. But it is not right to expect that they should be left to do this task unaided until they too are broken, mentally or physically through exhaustion and over-work. A crucial challenge for a new government will be to listen to, recognise and support the carers of Britain".

Shortly after winning the General Election, the new Labour Government oversaw the reduction of this backdating of ICA from 12 months to 3. By November 1997, they were planning to reduce it again to only one month. This further loss of income would have been another hard blow to financially pressed carers but due to the hue and cry raised over the issue, cross-party pressure forced the Labour Party to cancel this further attack on carers.

Another existing anomaly (Ref. 08), which can cause problems for carers, arises if a carer should decide to undertake a course of study. Having had, in a lot of instances to give up careers to care, they run the risk of further attacks from politicians. The course chosen may be with a view to the future after caring has ceased, or even to make themselves better carers, but the rules about benefits and education are rather complex. If the course involves more than 21 hours of "tutored" study in a week, they will lose their ICA. It is hazy as to what is/is not "tutored" study, even if they are studying alone at home and communicating by whatever means with the tutor. One would think that carers have enough to contend with without these nonsensical obstructions put in their path.

In 1988, with focus falling upon care issues and a government review of community care culminating with Sir Roy Griffiths's report "Agenda for change" (Refs. 09/10/11/12), the aforementioned care organisations merged into CNA, and in that year was represented on the Griffiths Advisory Committee.

The following year saw the Government response to the Griffiths Report with the publication of "Caring for People: Community Care in the Next Decade and beyond" and a TV series "Who Cares?", which highlighted the existence of hidden carers and the plight of carers in general.

In 1990, another Act, the NHS and Community Care Act was created but not implemented, and another report, the fifth of the Social Services Committee calling for more practical support was published. In 1991, another government publication appeared, namely the Department of Health Guidance on the Community Care Act, pinpointing the necessity of recognising and supporting carers. There was also a TV sequel series - "Who Cares Now".

There was no further act of note on the part of politicians in 1992, but CNA's campaigns were numerous. They included the following three:-

the largest UK survey of carers, nearly 3000, titled "Speak Up, Speak Out";
a campaign titled "Listen to Carers" - directed at encouraging social work, GPs and other professionals to support carers to a greater degree;
and a Joint conference with the Royal College of General Practitioners to raise GPs awareness of the needs of carers.

In 1993, the "NHS and Community Care Act" was finally implemented. Since this Act of 1990 gave carers no actual rights, CNA drafted a private member's bill to get carers more rights, and the Labour MP Malcolm Wicks took up the bill. Having a long active association with carers' problems, he was capable of handling the issue and able to speak from an experienced viewpoint. That private bill eventually became the Carers (Recognition and Services) Act and the law on 1st April 1996 (Ref. 13). The basis for the development of this Act were the findings and recommendations of two CNA reports namely "Community Care: Just a Fairy Tale?" in 1994 and "Better Tomorrows: Report of a National study of carers and the community care changes" in 1995. These reports had concluded that prior to this Act, most carers had not received much benefit from previous changes, plus services had worsened, had become more difficult to get and more expensive.

The Act gave carers a new right to be assessed. The social services/work were required, on request, to carry out a separate assessment of the carer at the same time as the assessment of the person for whom the care was being provided. Prior to this the carer's needs were often overlooked.

Between the 1st April 1996 and December 1997, CNA conducted a survey of carers' experiences of the Carers Act. The first report, "Still Battling? The Carers Act One Year On", showed that more than 50% of carers had not been informed of their rights to a carer's assessment by social services; 49% did not know how an assessment could help, and 38% did not know that they were eligible. It also revealed that 70% of carers were caring for over 100 hours per week; 68% were finding it hard to cope and 59% suffered health deterioration due to caring. The second part of the survey "In on the Act", focused on local authorities views of how the Act had been implemented. It showed aspects of good practice and major concerns over financing of the Acts' implementation. Some authorities were getting "In on the Act" with 47% of Scottish councils having planned new procedures, with 13% in Wales and 4% in England doing likewise. Of the Scottish authorities, 92% claimed that they, as a rule, informed carers of their rights when assessing the "cared-for".

CNA called for government aid to improve the Acts' implementation and urged local authorities to ensure that carers asked for assessment. CNA's chief executive at that time, Jill Pitkeithly (now Baroness Pitkeathly, Chairwoman of the National Lottery "New Opportunities Fund", and still batting for carers) said:

"This survey gives us a clear indication that the battle is not yet won. It shows clear gaps between policy and practice at the local level. The high proportion of carers who do not know they are entitled to an assessment or how it will help them is alarming and needs urgent attention. We found many instances of carers' health reaching breaking point because of their duties. Carers are the main providers of community care. It is in the interests not just of carers, but the whole of society, to see that the Carers Act works as intended. We will continue to monitor implementation of the Act throughout the UK".

Jill Pitkeathly trained as a social worker and spent 12 years with West Berkshire Health authority before becoming director of the National Council for Carers and Elderly Dependants in 1986. It was her merger negotiations with the Association of Carers in 1988 that saw the birth of Carers National Association, which she has spearheaded ever since as its Chief Executive and was at the forefront of the development of carers' issues since 1986.

In August 1997, the Scotland CNA (Nation Office) magazine "Scotland's CARERS" published an article titled "The Carer's Maze", written by Mr. Rob Kay, who at that time was a senior planning officer with East Renfrewshire Council (by Glasgow) Social Work Department, while living in rural Ayrshire, which came under the jurisdiction of East Ayrshire Social Work. He had responsibility for developing the Community Care Plan with health and housing agencies in partnership with service users (the cared-for) and carers. I can remember reading it when I was a carer and thinking "What chance do I have to make the system work for me, when a senior social work planning officer is having this trouble?"

In a recent exchange of correspondence, Rob Kay gave me permission to reprint his article under his name. He also suspects that it is still as relevant today as it was when written. His family are still domestic carers and he is still an active member of CNA.

The Carer's Maze

Rob Kay, carer and Chair of CNA Scotland's Advisory Committee, gives a personal view on the bewildering number of assessments available.

"At first sight, the various kinds of assessment for services available from the local authority seem truly comprehensive. But as I found out recently, all is not what it seems! My wife and I work full time. We care for my wife's father Alex, who is 77 and has a number of severe disabling conditions. We also have a little boy, Jordan, aged 3, who has Downs Syndrome, and two other children, aged 18 and 8. So as a family:-

My wife and I (and our eldest daughter) have a right to a carers assessment under the Carers Act;
Alex is entitled to a Community Care Assessment under the NHS and Community Care Act;
Jordan is entitled to a Pre-School assessment; and
We may also (including Ginny our eight year old) be individually entitled to carer's assessment under the Children Act with respect to caring for Jordan.

Confused? We certainly were!

So a call to our local social work office seemed in order, to see what was available to help us: our local social worker made an appointment one evening to see us. Come the appointed day, he failed to show up. Expecting a grovelling apology, I waited, and waited. After a week I was losing my patience, so I phoned him up. "Sorry" he said, "I had some urgent personal business to attend to". Well, fine, but an apology would have been nice.

We made another date, and this time he did show up. I made all my carefully prepared points, focusing on the fact that our daughter didn't get much of a life because we were too busy looking after Jordan and Alex. Surely a home help to take some of the burden of cleaning and ironing would enable us to spend a bit more time with the kids, and maybe reduce our levels of stress? And some information on holidays for an active pensioner with mobility problems would be useful, to give us a break and Alex a holiday.

He listened patiently, and said that he would talk to the Home Help Organiser, and get some information on holidays. A few weeks later, I phoned and asked about progress. "So sorry", he said. "The Home Help Organiser can't spare you any hours at all, but I'll send you information about registered private agencies operating in the area."

Three months later, we are still waiting for even this bit of information. And nothing has been forthcoming about respite either. The moral seems to be: if you are physically able to get to the phone, and sufficiently intelligent to find the number of your local social work office, then you might as well go sing in the wind as far as East Ayrshire is concerned. And a written response to the assessment? A copy of the care plan? Who are you kidding?! You might disagree, and that would never do!

Well, as you can probably imagine, I'm fairly fed up with the process. We first asked for help over two years ago, and have been down quite a few blind alleys since then. If an assessment is requested, then a proper written report, explaining why services are being granted or refused, is surely the least we can ask for?

I have now had a word with the local carers centre (local meaning about thirty miles away in this rural area), and they have agreed to take up our case. In the meantime, we just have to struggle on. Juggling jobs and caring doesn't leave much time for any more futile interviews with wishy-washy "professionals".

Of course the council has a lovely shiny strategy for carers support, which involved many carers in hours of consultation. But the message has remained a well-kept secret as far as actual social work practice is concerned.

Good luck with your attempts to get services; I just hope you do better than we have done so far."

Author: Rob Kay
Scotland's CARERS August 1997.

Regarding "The Carer's Maze", he tells me that he had a big fight with East Ayrshire Council Social Work since they wanted to charge him for services that his son needed and which he did not consider justifiable. His family moved to North Lanarkshire Council (again, just by Glasgow), and then had a similar fight, which the Kay family eventually won.

Their son now gets better one-to-one out of school support with extra-curricular activities and one-to-one in-school teaching support courtesy of the Scottish Executive support for integration and social inclusion, and also has significant financial allowances assistance. They have also succeeded recently in getting free incontinence supplies after years of hassle with the National Health Service. His father-in-law is now in a home and well cared for and helped by the Scottish Executive's recent introduction of free personal care, although one has to hope that such care is not affected by the recent question marks around that provision. There has been dubiety raised about whether the whole process has been properly budgeted, and whether there is a possible reneging in the wind regarding politicians' promises.

For Rob Kay and his family, caring matters have improved but this is because they know how the system can be made to function properly for carers and also because they know their rights. They know of lots of carers who need professional advocacy to be able to get the assistance and personal services that they need. There are still numerous carers who cannot find a path through that maze due to the numerous bureaucratic blockades placed in their way, and the strict criteria that have to be met before services are granted.

To return to the first family referred to in my previous article, namely the Perkins family in South Wales, I have recently exchanged e-mails with one of Naomi's sisters, to inform her of the article and to enquire if any progress had been made or if they were still being disgracefully treated by the system.

As well as being Naomi's sister and one of her carers, Claire tells me that she is a registered nurse in the NHS and regularly finds herself in conflict with her colleagues over attitudes to patient care and care of relatives. I am told that it is rare to find someone in the system who understands what it is like to have a dependant relative and accordingly know how to treat people with appropriate sensitivity, plus it seems that the system is constructed to cause further harm and distress to patients and relatives. On that point, I wholeheartedly can only agree, since I consider that my experiences as a carer gave me ample proof of the insensitive callous manner in which this island treats its elderly and ill, and their carers/relatives. Those people who manage the NHS also do not seem to appreciate the stress that they cause to the professional carers, namely the nursing/medical staff and staff in general. Due to the past Thatcherist Tory Party and their stupid idea that everything in life can be measured in monetary terms alone, the NHS is in a mess, with widespread demoralisation and unbelievable levels of inefficiency and incompetence. It is not surprising that over the years there have been a large number of nurses and some doctors fleeing the NHS, due to the politicians. There also exists those clowns who have taken nursing off the floor of the shop, so to speak, and have stuck it into colleges where trainee nurses get their heads filled with socio-political-philosophical theories, bearing no relation to the real practice of nursing, which is primarily based on the one-to-one relationship between the nurse and the patient in the bed. Computerised care plans come a very poor second. There have also been recent articles in the press of hospital staff being criticised for spending too much time with the patients. When have you heard of anything so ridiculous? There have been cases of doctors and nurses getting criticised for doing that, when the pen pushers considered that, instead, they should have been attending some meeting or social gathering within the hospital. It has been noted in the press recently that there has been an unwarranted increase in the number of administrators in the NHS and that there are now more managers in the NHS in England and Wales than there are beds.

John Humphrys's support and wonderful article in the Sunday Times of 21 April 2002 produced responses of good wishes and offers of financial support from as far as Canada and the USA. Mr. and Mrs. Perkins felt uncomfortable about accepting other people's money and that to do so would have belittled the larger issue that was at stake. John Humphrys was already in receipt of a large number of generous cheques. He felt it was appropriate to make a charitable donation in Naomi's name, to a cause of Mrs. Perkins's choosing and the monies received went to a children's hospice in Wales.

Mr. and Mrs. Perkins and another couple, who are devoted and loyal friends, started a petition calling for a review and changes to those linking rules which were and are a source of this kind of trouble. Mrs. Perkins is still waiting for a satisfactory response from Mr. Anthony Blair, PM, and the Work and Pensions Committee which deals with such matters. It is, as usual, an uphill battle, since Mr. Blair passed the petition to the W and P Committee, which, so far, has only sent Mrs. Perkins a duplicate of a letter which they had sent her last year! The secretary of state cancelled that fine of 2104.10p and they did not have to pay it, but they are in contact with others who have not received equal justice. They know a single mother in similar circumstances. She has a teenage son with a mental handicap and challenging behaviour and she received a demand for payment of the outstanding money. She informed the relevant authority that as she was on a low budget she could not pay the full amount but could agree to pay a weekly repayment plan. The bureaucratic response was that this was unacceptable and she would have to pay the full amount or further action would be taken against her.

In different, though related cases, there are parents having to continuously fight to secure safe respite care with adequate mobility and services for their children. They get blocked and penalised at every turn. Naomi's sister is angered that there are married people with children receiving tax advantages for children that they chose to have and then do not bother to accept their role as responsible parents and look after the children properly. They expect society to do the role of caring for their offspring and to carry the cost, which their irresponsible behaviour causes, where in comparison people like her parents are getting marginalized and punished for the sacrifices they make.

All of the Perkins family know of my e-mail, and they are all happy for me to use this information as I need in my article because they believe that people should be aware of just how their supposed DEMOCRATIC??? Government works.

Carers Scotland has as its present campaign a range of action centred upon the obvious on-going task of getting society and state to recognise carers and to raise awareness of the issues that I have raised on my website. Those issues are the marginalisation of carers by NHS and other health/social care professionals with the consequent disregard of the stress placed upon the carer/cared for partnership.

The Community Care and Health (Scotland) Act 2002 (Refs. 14/15) has amendments secured by Carers Scotland. The rights include:-

A carer's right to assessment.
A duty upon local authorities to inform carers of that right.
A duty to take carer's views into account when preparing a care package.
A right to assessment for parent carers and carers under the age of 16.
The power to require NHS Boards to produce Carer Information Strategies.

All of these points politicians have supposedly agreed to and lauded down the years, but as those who have to work with their plans and policies have, I am sure, found out, they can so often turn out to be political rhetoric. Carers Scotland have produced a Carers' Manifesto based on the results of member consultation and this is their main campaigning platform for the coming Scottish Executive elections. One can only hope that the Scottish Executive does not forget the traditional Scottish concepts of moral responsibility and sense of society, and thus refuse to allow the despicable class ridden mentality of Westminster to prevail. Then, and only then, it will be a possibility for politicians' deliberations to be something other than rhetoric.

Carers Scotland have been closely involved in the policy guidance development of this Act to ensure effective implementation. They are furthermore actively linked to the Scottish Carers Alliance which is composed of carers, disability, voluntary sector health and advocacy groups and Age Concern to increase awareness of caring's effect on the carer's own health. All of this is relevant to the policy initiatives and practice changes that are presently underway in health and community care services.

Within the Scottish Executive (Ref. 16), the Health and Community Care Committee has particularly focused on the care of the elderly and on mental health issues, which the Committee feels are neglected areas deserving a higher profile. The Committee has undertaken a series of fact-finding visits throughout Scotland in connection with this.

Here, in the City of Glasgow, West of Scotland Carers Forum and the Princess Royal Trust for Carers (Ref. 17) have a Joint Carers Strategy for Glasgow. Its purpose is to improve support services for carers and help them to care. Glasgow expects its 62,000 plus carers to benefit from more targeted resources and an extra 1.2 million funding. This will be directed to nine existing carer centres that provide local focus and support to Glasgow's carers.

I trust that this article has been of some interest and that the website references have proved to be of more than a little use. I shall close for now, as I need a good cup of coffee.

Take care and keep smiling,

Kindest regards,
Iain R. Stewart.

The above droplist gives access to the References in the displayed order, in a new window in the centre of the screen. The list below gives the same access, as above, with each in their own windows at the top centre of the screen, allowing all References, and two pages of the same site, to be viewed simultaneously.

Ref. 01
Carers UK
Ref. 02
Department of Work/Pensions (Carers Allowance)
Ref. 03
Department of Work/Pensions (Carers)
Ref. 04
Age Concern Index (Care Information)
Ref. 05
Carers Net (Coalition of Carers in Scotland)
Ref. 06
Directgov 10 Downing Street website
Ref. 07
Rethink Caring
Ref. 08
Child Poverty Action (Carers Allowance)
Ref. 09
Community Care Act
Ref. 10
British Geriatrics Society
Ref. 11
Hampshire (Support for Carers)
Ref. 12
Scottish Executive (Care and Social Work)
Ref. 13
UK Parliament Carers (Recognition and Services)
Ref. 14
Community Care and Health (Scotland) Act
Ref. 15
Community Care and Health (Scotland) Act (cont)
Ref. 16
The Scottish Executive
Ref. 17
Princess Royal Trust for Carers

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Iain R. Stewart, Ex-Carer
excarex@excarex.com

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