The Meaning Behind My Blog Silence

Submitted by tonyplant on January 4, 2007 - 13:18.

I apologise for the lack of posting lately. From time to time my wife's lower back plays up in teeth-gritting sort of way and that kicked in just before Christmas and is showing no sign of abating.

I enjoyed the pre-Christmas Happystance workshops and have some more dates booked later this month and Februrary.

Happy New Year and I hope that your plans for 2007 are realised for you.

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Dr. Crippen's Perspective on Children with Depression

Submitted by tonyplant on November 9, 2006 - 18:42.

The excellent Dr. Crippen has posted a remarkable discussion of children with depression. He goes through the NICE guidelines for managing depression in children and young people.

The discussion makes for grim reading. Earlier this year, the Great and the Good of the BMJ's Science Committee published a very dispiriting report about the state of children's mental health in the UK. What makes Dr. Crippen's analysis particularly disappointing is the news that GPs seem to be so overlooked despite their front-line position.

Crippo has left a comment on Dr. Crippen's post. He articulates much of the pain and difficulty experienced by families who care for a family member who is depressed.

I don't know what the solution is to the estimated mental health treatment needs of 1 in 10 children. I strongly suspect that the only probable large-scale delivery mechanism that is practical will be based in schools. I am confident that any multi-agency solution must involve the family doctor.

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Poor Care For The Elderly

Submitted by tonyplant on October 18, 2006 - 13:49.

The Times, amongst others, has a report on the poor state of home-care for elderly people. The 15 minute time slot came in for particular criticism.

In the first ever major study of domiciliary care services in England, the Commission for Social Care Inspection (CSCI) found that councils were unable to attract and retain staff because of poor pay and that both carers and the cared-for complained of being rushed, demoralised and unable to form meaningful relationships.

The "15 minute slot", in which a care worker is expected to visit a person, wash them and get them dressed and ready for the day, was identified as a symbol of a regime that will be unable to handle the growth of Britain's older population.

The 15 minute allocation is clearly a nonsense. Too many people don't receive the amount of care that they need at the time they need it, even if it would keep them independent and active for longer and delay the need for more intensive and extensive care.

However, it is all very well for Age Concern etc. to welcome the report but what we need is an authoritative and well-costed report on what it would cost to provide appropriate social and personal care.

There seem to be several reports about the deplorable state of hospital food and the numbers of elderly people who need assistance to eat in hospital but don't receive it.

There has been a persistent problem with patients not getting the nutrition they need while in hospital. The release of the figures, in a parliamentary written answer, follows a study by Age Concern into what it called "the scandal of malnourished older people in hospital". Nine out of 10 nurses told the charity's Hungry to be Heard survey that they did not have time to provide the elderly with the help they need at meal times. (Telegraph)

Dr. Crippen has some discussion about using volunteers to feed patients but I don't think that this is a practical alternative for a number of reasons.

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What Is A Cost?

Submitted by tonyplant on October 16, 2006 - 12:22.

There has been a lot of discussion about the NICE decision to block the prescription of various drugs in the early stages of Alzheimer's Disease.

For one thing, they do not just benefit the patient but also the carer, which actually halves their true cost to £1.25 a day – or about the same as four cans of cat food.

If you look at the wider picture, take the drugs away, and carers will not be able to support their loved ones as long as they would choose to do so. Sufferers will be forced into care homes, which cost on average £500 a week, much sooner. Now that is not good value for money – compared with a week's worth of pills for £16.50.

The article quotes the conventional wisdom that carers save the country £57 billion. Caregiving exacts its own high-price toll. It is easy to demonise groups who don't agree with us but it is impossible to believe that the very smart, thoughtful and even altruistic (why else go in for a career in public service) people who work in the relevant government departments don't know this. They must know the cost of doing nothing. Presumably these people know all about how to appriase not only the financial costs and clinical benefits but the wider, human costs and those that are more indirect. Are we failing to have a conversation about the costs because we would not like the conclusions or the outcomes? If we can't be involved in these decisions and discussions, how else are we ever going to understand the decisions that are made on our behalf about rationing decisions and the treatment of ill or elderly people and their carers?

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Is It Depression or Bleak Life Circumstances?

Submitted by tonyplant on October 13, 2006 - 12:40.

Have you come across the Patient Health Questionnaire (PHQ-9)? Pfizer is terribly proud of the PHQ-9 and claims that it is an

easy to use patient questionnaire [which] is a self-administered version of the PRIME-MD diagnostic instrument for common mental disorders.

I'm met a number of carers who have been put through the PHQ-9. By anecdotal report, the lowest score to date is 20 (severe depression). Oddly enough, lots of carers have trouble falling/staying asleep, particularly if they are listening out for sounds of illness or an indication that someone is up and wandering (e.g., someone with Alzheimer's Disease). Some carers lose their appetite with anxiety and others overeat for comfort. A number are in such distressed financial straits if they've given up work to care for someone that it's not unusual for them to feel like they're failures and face a future that is so bleak that they don't want it. These questions would catch a lot of carers and their everyday circumstances.

Is it hopelessly naive to say that the PHQ-9 is describing a state of mind that would disappear in many of the affected carers if they had appropriate resources and their future didn't look quite so bleak? The GPs who administer the PHQ-9 are familiar with the circumstances of carers: do they administer anti-depressants or offer talking therapy (good luck with that waiting list), or do they look at the score and decide that it is not really indicative of depression?

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The Toll of Being a Caregiver

Submitted by tonyplant on September 28, 2006 - 12:46.

AADT has a good discussion of a recent story about the stress of caring and its impact on physical and mental health.

[C]aregivers, a group whose health is typically much poorer than contemporaries not caring for a loved one, endure stress and health deterioration in relation to the amount and intensity of the care they give. This burden, usually above and beyond work duties and nuclear family obligations, leads to high levels of depression, anxiety and stress. In describing her own experiences, one caregiver highlights how health can decline so rapidly:

Sometimes you didn't have time to take a shower. You didn't eat properly because you're so busy preparing their food and tending to them. You miss doctor's appointments because you can't get somebody to stay with him or you can't (bring) him," [Barbara Redmond, 68, said of caring for her husband for 2 1/2 years before his death.]

They give a very good summary of the statistics.

Carers need practical support for what they do and they need support for themselves. Yet again, this problem is only going to increase as our population ages. Fewer people will have the physical resources to allow them to carry out heavy-duty caring. There will be a time when we realise the cost of doing nothing.

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An EMT Asks, "Will No One Care?"

Submitted by tonyplant on September 13, 2006 - 10:47.

Magwitch asks, Will No One Care? He tells the story of young people with mental health problems and the lack of support for those who care for them. The family and friends who care for them are overwhelmed by the scale and complexity of needs that confront them

I hear too many stories like this when I run workshops. EMTs, paramedics and medical staff come across them everyday but there just seems to be a complete dearth of appropriate provision for carers. I've asked this question before, what is the cost of doing nothing?

Copyright 2006, Tony Plant Happystance Project

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A Year To Live, A Year To Die

Submitted by tonyplant on April 1, 2006 - 10:32.

Following on from The Emotional Rollercoaster of Caring, I've just come across the searingly honest A Year to Live, A Year to Die. I strongly recommend that you read through the essays and listen to the recordings. It's a complex story of compassion and anger, the juxtaposed emotions that are familiar to so many carers. The widow disusses her grief and the social pressures about discussing health issues.

The background of the story is that:

Mary Beth Kirchner [the producer] received an extraordinary offer from someone who was entering what would likely be the most difficult time of his life. Stewart Selman had just been told he had a malignant brain tumor, and he said he wanted to keep an audio diary.

To tell the complete story, Kirchner asked Rebecca Peterson, Selman's widow, to listen to the diary and share her own memories of his final months. The resulting stories, intimate and full of hard truths, describe how terminal illness can usher a life to its end.

Stewart returns from hospital with the news of his diagnosis with a brain tumour:

I just felt terrible and I really had these incredible feelings of guilt, that I was abandoning my wife. We had made this lifetime deal. I wasn't going to be there when we were old or whatever and she was going to be left with my children and it would be much, much harder.

On a follow-up visit, Rebecca remembers that the neurologist said:

there's a lot of different ways people handle it. But there are some families can pull together and achieve this kind of transcendence.

Rebecca has a hard time matching that rhetoric to the experience of herself and her family:

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Wanless And The Future Of Social Care

Submitted by tonyplant on March 30, 2006 - 13:47.

Following on from my semi-articulate post on the cost of caring, the Guardian carries an overview of the Wanless proposals for expanding basic social-care services to elderly people. Wanless calculates that the social care spend needs to triple to around £30 billion by 2026 to meet the anticipated needs of the baby-boomer generation.

Wanless comments that the present system means that only the rich or those on means-tested support "could meet the "catastrophic" costs of the care packages needed by the most infirm". He says:

there should be universal care for all older people needing it, including help with bathing, dressing and feeding. But instead of there being a limited service for free, as happened in Scotland, there should be a partnership approach funding more generous provision. The state should pay 66% of the bill and the rest should be funded equally by the state and the individual, he said. Anyone not wanting to pay this contribution could forgo the extra service. The poorest should get help via benefits to pay for their contribution...

By 2026 the number of people in England over the age of 85 will have risen by two-thirds. Up to 450,000 more people will need a care home place or social care services to stay at home.

The report is said to support the conclusion that greater spending on improved social care for elderly people would reduce NHS spending. More than 40 per cent of the NHS budget is currently spent on people aged over 65. James Bartholomew argues that "no country neglects its elderly as badly as Britain does". If elderly people genuinely account for more than 40% of the NHS budget that I should think there are few countries that are achieving such poor outcomes for its expenditure.

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Tony Robinson and The Costs of Caring

Submitted by tonyplant on March 29, 2006 - 16:27.

Tony Robinson filmed a documentary about caring for his mother, who had Alzheimer's: he generously gave an interview and Q&A session about his caring experiences to Times Online. One of the comments that Robinson makes is that

care workers need better pay, more training and a proper career structure.

In the course of the programme, carers frequently raised the issue of how angry they were about the inadequacy of the Carers' Allowance. Juxtaposed to Robinson's above recommendation for care workers, its seems as if carers get substantially less pay, no training, and that caring destroys their own career structure. One striking example of this was Janice Marrs. Marrs revealed that she had given up a well-paid, senior post to care for her mother. Along with the job and salary, she gave up many of her pension arrangements and other necessities that would have given her security in her own future. She made the cogent point that she is paid just £45 a week to care for her mother for 24-hours a day. "Sometimes I'm up four times in the night - why is it just because she's old and very ill that I'm written off as well?"

Marrs contrasts her payment with that of Foster Carers, who she said receive £250 per week. I take her point as to the difference in treatment, but I'm not sure that the seeming animosity displayed towards the comparatively generous allowances awarded to Foster Carers on the Carers UK forums is appropriate, galling though many of the comparisons must be (particularly that a Foster Carers Allowance is paid per child, but a Carers Allowance is fixed, irrespective of the number of people for whom one cares).

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