Carers' Human Rights: Are They Invisible?

Submitted by tonyplant on August 1, 2006 - 10:06.

Carers UK is asking whether carers have human rights.  Carers UK report that

Carers, like everyone else in the UK, are entitled to rely on the protection of the Human Rights Act 1998, which should ensure that public bodies take account of their human rights when they provide services. Public services play a critical role in guaranteeing carers' human rights. They can ensure that carers have the support they need to maintain a normal life. The report we are publishing today shows that reality falls a long way short of this ideal.

 

Many carers are pushed to the brink of physical and mental collapse because of the lack of support they receive...

Why do carers seem to be the only group of people who are automatically exempt from the restrictions of the working time directive? Why are carers expected to work under conditions that are assessed as too much of a health and safety hazard for trained professionals? The Guardian offers several grim stories of overworked and exhausted carers that will be only too familiar to many people. In the light of today's news about tightening of eligibility criteria for care for elderly or disabled people, it seems as if relief will not arrive any time in the near future.

 

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Caring For People With Schizophrenia

Submitted by tonyplant on March 23, 2006 - 21:11.

The excellent Dr. Crippen has posted a remarkable account of an elegy he gave at the funeral of his friend Emma, whose life came to a premature close after years of living with schizophrenia. The account of Emma's life would be incomplete without talking about the destructive force of schizophrenia, from the time when she was a teenager until her untimely death.

Schizophrenia. Perspectives on it vary so much. There is the demonising view of some popular news reporting that implies that all schizophrenics have the potential to become dangerous to all those around them. And yet, historically, it was not that long ago that schizophrenia (like severe depression) carried a romantic air about it - it was seen as the fine line between madness and creative genius. Schizophrenia has become the universal metaphor for conflicted duality. It stands for self-indulgence and stoicism, inferiority and perspicacity, alienation and virtuosi of empathy, victim and persecuter.

The eulogy is a poignant summary of Emma's life. Dr. Crippen's charts the decline of Emma with respect and much affection. It is particularly sad to read of the gradual loss of those activities that she enjoyed: and to learn that someone who loved reading so much gradually found herself unable to read. However, we learn to admire her resilience and that she retained her humour, and sometimes mined the vein of her insight into her condition:

read more | add new comment | schizophrenia | eulogy | dr. crippen | carers | caregivers | alcoholism | addiction

Do Carers Have Human Rights?

Submitted by tonyplant on March 16, 2006 - 17:50.

Carers UK is asking whether carers have human rights.  Carers UK report that

Carers, like everyone else in the UK, are entitled to rely on the protection of the Human Rights Act 1998, which should ensure that public bodies take account of their human rights when they provide services. Public services play a critical role in guaranteeing carers' human rights. They can ensure that carers have the support they need to maintain a normal life. The report we are publishing today shows that reality falls a long way short of this ideal.

 

Many carers are pushed to the brink of physical and mental collapse because of the lack of support they receive...

Why do carers seem to be the only group of people who are automatically exempt from the restrictions of the working time directive? Why are carers expected to work under conditions that are assessed as too much of a health and safety hazard for trained professionals? The Guardian offers several grim stories of overworked and exhausted carers that will be only too familiar to many people. In the light of today's news about tightening of eligibility criteria for care for elderly or disabled people, it seems as if relief will not arrive any time in the near future.

 

read more | add new comment | social care | human rights | carers | caregivers

Bad Week for Caregivers And Those Whom They Care For

Submitted by tonyplant on March 16, 2006 - 17:25.

It's a bad week for carers in the UK.  On Monday, Dr. Crippen posted a diary entry about his Monday morning surgery that detailed the plight of several carers. One of the carers knows that:

when social services “assess” her, she is classified as low need. She knows the system. She worked in it herself. “The best thing I could do is have a heart attack, then we would be high need” she says.

Today, Thursday, it has been announced that Councils To Cut Care For Old and Disabled. Four in five local authorities report that they are about to tighten the eligibility criteria for services for elderly and disabled people. This is in response to funding problems with the NHS that have led to greater than anticipated calls upon Social Care Services budgets.

Almost half the councils reported a cut in funding from local NHS primary care trusts. Councils highlighted the soaring costs of care for the ageing population, unprecedented increases in demand for services for children with a learning disability and rises in fees for care homes. Eighty per cent of councils said they would be tightening further their criteria for provision of services for adults. Thousands who would have received care will go without or pay privately.

So, it looks as if there is going to be no provision for those people who are classified as "low need". Even when there may be strong reasons to suspect that a lack of appropriate support now may lead to a breakdown in the carer's health and create more complex problems in the future. Some carers, like David, have never had a carer's assessment. He has been looking after his wife and son for many years. He says of his situation:

read more | add new comment | social care | dr. crippen | carers | caregivers | care assessment

The Caregiver Burden

Submitted by tonyplant on February 16, 2006 - 17:48.

I’ve previously written about the varying health costs of caring. Today, the New England Journal of Medicine published the largest study ever to quantify caregiver burden and the widower effect.

The findings pretty much reflect your intuition on the subject. Carers are most stressed/vulnerable when a loved one is admitted to hospital. And, as per previous research, carers well-being is related to the degree of cognitive or physical disability in the person for whom they are caring. The BBC carries a good summary of the paper. And the findings of the paper are robustly lampooned over on NHS Blog Doc (which is rapidly becoming an addiction). However, the paper will be worth a look when it is available online for what it says more generally about the impact of caring on social networks. And for the observations around the impacts of different illness and varying levels of disability on the well-being of carers.

Accounts like this reaffirm what I want for the Happystance workshops for carers. However, I’m very aware that such interventions or activities have to be offered appropriately. Which works against offering it at the riskiest time, as recommended by these authors. And possibly reinforces my belief that the workshops should be available on a regular basis and to offer a way of strengthening carers’ own stress-management and resilience techniques.

read more | add new comment | happystance | dr. crippen | carers | caregiving | caregivers

What a Difference F2F makes

Submitted by tonyplant on January 16, 2006 - 16:33.

Today I managed to have a face-to-face meeting with a Carers’ Co-ordinator at my local Voluntary Services Council. This was a text-book example of how dealing with people remotely can lead to bad advice and a lot of wasted time and effort. I met with this co-ordinator face-to-face this afternoon and within minutes I had: the forms that I need to fill in; agreement as to the multiple forms of ID that I need to provide; the news that after some investigation, my VSC can provide a registered body number to support the application; and the welcome information that my personal financial contribution will be an estimated 17.50 pounds.

I don’t know why I could not have been given all of this assistance at any of the times when I’ve been in touch since November. And it makes more of a nonsense of some of the advice that I was previously given and that I’ve whinged about in earlier entries. However, at least I now have some paper that makes me feel that I am on my way to obtaining this wretched enhanced disclosure. Some people do respond better to face-to-face meetings: I’m of the business mind-set that thinks asynchronous communication like emails and voicemails are still valid forms of communication and worthy of consideration and response. However, this is progress and I welcome it.

A good outcome from today is that I’ve been invited to attend a Carers’ Networking meeting on 7th February. I’m being allowed to run a taster session of some of the workshop content. I’m hopeful that this will be not only a good networking opportunity but a chance to sign-up some groups for the Happystance workshops.

read more | add new comment | happystance | enhanced disclosure | CRB | carers | caregivers