UnLtd Blogs - carers

The Cost of Being Upbeat

Tue, 05 Dec 2006 15:33:28 +0000

An article in the Sunday Times discusses The price of keeping up a brave face. Cathy Galvin gives her own response to the news that friends of Gordon and Sarah Brown report that they have remained upbeat since learning that their baby son Fraser has cystic fibrosis, a chronic, incurable condition.

Galvin doesn't pull her punches and paints a picture of poor support and family tensions that is too familiar to too many families in the UK. She says that being "upbeat" had become

the ultimate betrayal of the estimated 1.9m families in Britain whose children have some kind of special educational need, who play down the load they are carrying and rarely tell it how it is. Why? Because to say, �Well, he�s doing well on the medication but we were up all night because he couldn�t breathe. And we�re worried because his sister is being bullied at school because he�s different. And we�re running short of money because one of us needs to be at home in case there�s an emergency during the day� is not what people want to hear...

To hint at the daily, gruelling realities of looking after a disabled child is to risk � especially if you move in healthy, wealthy circles � being boring, to sound as though you�re not coping, to awaken in your listener the worrying prospect that the gap between their lives and yours is so vast that you and your family have become something alien and other and, among your colleagues, the suggestion you might not be up to the job.

It's a good piece but I have to criticise the Sunday Times for failing to provide an outline of what adequate provision would look like or what it would cost (an UnLtd colleague attempted a costing of mental health care and school provision for 1 million children earlier this year).

Laughing with the Greater Manchester Police

Thu, 23 Nov 2006 17:16:38 +0000

I was pleased to be invited to participate in a Carer's Day, organised by the Women's Group of the Greater Manchester Police. So, if you've ever wondered what a Happystance workshop looks like, this is it!

Here, a Laughter Chorus performed Happy Birthday with laughs of different tones rather than in song.

We finished with a laughter conga line and some ingenious shoulder and neck rubs.

The picture is generally bleak for carers in the UK but it is essential that carers have some attention paid to their own needs. After the Happystance slot a number of the participants came up to say how much they had enjoyed the event. They had been a little apprehensive that the day would be worthy but very dull and had appreciated the unexpected levity.

Flexible Working Arrangements for Carers

Sat, 11 Nov 2006 15:18:40 +0000

Depending on a number of factors you will either believe that flexible working arrangements for carers is the ruination of good business practice or you will think that it is a innovation that is long overdue. A lot of time and discussion has been spent in defining carer.

The definition of carer is an employee who is or expects to be caring for an adult who is either their husband or wife, their civil partner, or a close relation.

The employee will also fall into the government category of carer if they look after somebody who lives at the same address.

If you fall wihin that definition of carer, then you will have the legal right to request adaptable hours from 6 April 2007. Community Care, amongst others, is unhappy that the definition of carer is quite narrow. It is a little confusing, because by the definition that I quoted above, step-relatives are excluded. Blended families have been a social reality for some time and the omission of step-family members does seem to be quite striking. However, according to Community Carer, step-relatives are included.

It rejected calls from campaigners to apply the right, enshrined in the Work and Families Act 2006, to all carers, keeping to original plans to cover employees caring for a partner, relative or someone else living at the same address.

A Bleak Picture of Caring in the UK

Thu, 02 Nov 2006 16:21:57 +0000

The Duty to Care campaign by The Princess Royal Trust for Carers is reporting findings from a study that they commissioned. The headline that is attracting most attention is that over half of carers (51%) across the UK have felt like walking away from their caring responsibilities.

Some of the stark findings of the report are as follows:

Almost half of those caring for a partner, parent or child with a disability said they felt they never had a choice in taking up the role.
With six million carers in the UK, this could equate to just over 3 million people walking away, which would mean that the NHS would not be able to provide the care needed to keep people living independently in their homes.
A quarter of carers would like financial help; three-quarters would prioritiese time out, practical support and someone to talk to.
Many carers recognise that there has been a change in their relationship and experience feelings ranging from anger to sadness about the loss of the previous relationship they had with the person they now care for.

The snap-shot series of carers' statistics that are attracting a lot of comment are that:

71% of carers said they were stressed.
83% of carers are frustrated by their caring role.
56% of carers feel depressed.
58% of carers are angry.
52% of carers are feeling overwhelmed.
53% of carers feel that they are taken for granted.
32% of carers are caring for a parent.
28% of carers are caring for husband/wife/partner.
14% of carers are caring for a child with a disability or illness.
64% of carers turned to family and friends for help.

Campaigns need to sensationalise their findings in order to attract attention but some of the coverage of this report is ill-judged. Although it is undeniable that many carers feel like walking away, the same sense of duty that led many of them to take up the role of carer would prevent them from abandoning their loved one. In my experience, it is this knowledge that can lead to carers feeling overwhelmed, uncared for, and taken for granted.

From Itchy Wrists to Schizophrenia

Fri, 27 Oct 2006 12:55:58 +0000

Dr. Crippen saw a patient with 'itchy wrists' (Dr. Crippen's Case Notes, Thursday 26th October, patient no. 5).

There is nothing to see. I tell him I have not got a clue why his wrists are itching. Then he tells me why he really came. His 26 year old daughter has schizophrenia and has just been discharged from hospital after a prolonged 14 month admission, during most of which she was on a section.

This is not an unusual case. Parents have lived with schizophrenia for so long that, although their love isn't burned out, their resilience is. The daughter in this case has sheltered accommodation near to the parental home. However, she only stays there overnight: everyday, she turns up in the morning and only goes back to her accommodation when her parents take her there.

Dad cares for his daughter but cannot manage being with her for more than short periods. But he feels guilty if he turns her away. They need to have a distance between them, both physically and mentally. I have to try to give dad �permission� to do that. Not easy. He still feels guilty that he does not have her living with him permanently.

Some sheltered accommodation offers a full range of activities but they don't always appeal to the residents. I don't know if any facilities are available here. It would be good to know if Social Services are in touch with the family and listening to them during this time.

It's Carers' Week in Australia

Thu, 19 Oct 2006 15:42:14 +0000

It's Carers' Week in Australia. Health Psych has written a nice blog about the week and the events: Caring for the Caregivers.

Chronic Illness and Marriage Breakdown

Sat, 14 Oct 2006 15:05:26 +0000

I've just come across a discussion of the bleak finding that 75% of marriages break down where chronic illness is present.

Seventy-five percent of marriages where chronic illness is present do not last. That is an overwhelming number to me, and it might be misleading. People divorce for all sorts of reasons, and it doesn't necessarily mean there is a cause and effect relationship between chronic illness and divorce. It could be one of many mitigating factors, but looking at the statistic, it's not possible to weed that out. But certainly between lost income due to sickness, high medical bills, loss of identity, pain, frustration, etc, there are a lot of ways to look at how chronic illness could be implicated in these findings.

I wouldn't be too surprised if chronic illnesses contributes to financial and other social problems that, combined with problems that resemble depression, do make some people feel that their only option is separation. However, with all due respect to the wonderfully nochanlant Sinatra in the picture, I believe that it is rare to "Divorce Your Loved One With Dignity" even if it is etched in stone.

Time after time, the research indicates that marriage is good for people's health and resilience, yet it can be overwhelmed by so many outside forces. I have permission to share some details of a couple I came across when I was running a workshop. The man is separated from his wife (he hopes temporarily) because of their financial problems, brought about in part by the wife's condition. The wife does not yet have any support in place, so he pops in most days to make sure that she is OK and to do things for her because she has no family or friends who are close enough to carry out these chores etc. for her and she has significant mobility and upper-limb problems. The wife is still waiting to be paid any benefit (she was sent the wrong forms and this is taking a long time to rectify). Because the husband once answered the phone to a DWP enquirer when he was over at the house, the couple have been hauled in to be investigated for fraud because this action was deemed to be suspicious - the investigators don't care that there is a note on the wife's case that says to contact her in writing rather than by telephone because she has hearing-loss and doesn't answer the phone. Anyway, it seems that because the husband visits his estranged wife regularly and does chores for her that she can not do, then her claim is seen as invalid. Despite the fact that they are separated and don't live together. The husband broke down when he was telling me this and apparently broke down during the interview. He had even been asked questions about when they had last had sex. Carers really can have a raw deal on so many fronts. I more and more understand why Carers UK questions whether carers have any human rights.

Making a small difference

Sun, 24 Sep 2006 17:00:09 +0000

I've just had a lovely note from one of the carers who joined in with a Laughter session I ran in Ealing a few weeks ago. Along with the playful laughter exercises, we talked about some simple things to try to help lift our mood every day. One of them is simply to write down 3 blessings (things that went well) during the day. They can be small things (a stranger smiling "hello!" walking down the street, the smell of a rose, etc.). The trick is just to actively recall a blessing, without denying the stress and strain of the day. Over time this becomes a habit and you naturally realise that life isn't all bad.

Yes, this does sound Pollyanna-ish but for a number of people, including this carer, it can be surprising helpful. She now finds herself walking down the street actively looking out for a blessing. In line with the findings reported by Richard Wiseman in The Luck Factor, more often than not she finds them. She said she is surprised at how much of a difference this is making to her day. She feels happier and less stressed than before.

Of course, this note is a lovely blessing for me to include in my list today. Along with the beautiful Campanulas Sainsbury's were almost giving away this afternoon and the fun of watching a Spaniel trying to jump about 6 feet up a tree as it chased a squirrel in the park (well, fun at least for me, if not the squirrel).

Carers' Human Rights: Are They Invisible?

Tue, 01 Aug 2006 10:06:43 +0000

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.

No Photos But A Nice Note...

Thu, 13 Jul 2006 11:38:10 +0000

I ran a Happystance event on Monday. The carers were a lively bunch which always helps if you're incorporating laughter into the event. Unfortunately, none of them had used a digital camera before so I don't have any pictures as a memento.

However, I did receive this note from the organiser:

I would just like to say thank you for running your Laughter Session on Monday 10th July 2006 at XXXX Carers Centre.

I have had such fantastic feed back from the carers who attended, they absolutely loved it!
I was wondering, if it would be at all possible for you to do another session? It was so well received that I have had carers calling me up asking for a repeat!
I can understand that you must be very busy, but on the off chance that you can, I have a few proposed dates.

It's feedback like that that makes running this project such a joy. I loathe the admin, I hate the time and resources that are sucked into paperwork etc. but the actual events are so rewarding - it's a real pleasure.

It's Carers Week!

Mon, 12 Jun 2006 08:40:31 +0000

It's Carers Week so Hugh Marriott was on BBC's Breakfast this morning. Hugh wrote The Selfish Pig's Guide to Caring. Hugh famously styled himself as a "selfish pig" for his bouts of resentment as a carer and his repeated wish that things could be different.

Hugh writes lightly about the shock of realising that his emotions of frustration, anger and resentment are common to many carers with a feeling that life has been permanently stalled and that they have become invisible: as he said, "We all had another agenda". He has devised his own acronym, Person I Give Love & Endless Therapy to (P.I.G.L.E.T), Hugh writes about his experiences caring for his wife who has Huntingdon's Disease. He writes about the common struggles with Social Services, care assessments, hospitals, Benefit Agencies and all of the other departments who seem to have an input into the lives of carers and the people for whom they care but without seeming to make a significant contribution to quality of life. Reading through these accounts, it is obvious why Carers UK argues that carers Human Rights are breached on a regular basis.

I'm running a couple of Happystance workshops this week - I'm looking forward to them and hope that the carers enjoy them as much as I do.

They're Not The Priority But What Would You Do For The Carers?

Wed, 12 Apr 2006 17:53:30 +0000

There's another new medical blog, Diagnosis NFI. Magwitch is the author, and an Emergency Care Practitioner. The blog hasn't been up for long but has already provoked some interesting questions about policies that affect the lives of carers.

Magwitch tells us about a call out to an elderly woman who seems to be the Sad and Lonely of the title.

In the end it all seemed to boil down to depression. She was a proud and independent lady but now, due to arthritis and cancer, was confined to her own home. Most of her friends has passed away and, apart from the odd neighbour who popped in from time to time, she had no one to talk to during the day. She had a son, who now lived with her and was her main carer, but he went out to work and she was left to her own devices for 8 to 10 hours at a time. She felt she was becoming a burden on him and the more she thought about it the worse she got.

Now, she was very obviously the priority, and for various reasons, she was admitted to hospital for further assessment. However, it became apparent that the son had problems related to his role as a carer. His mother resented the times when he was not with her and had begun to phone him if he was 10 minutes late home from work. She was taking over his days-off.

What Is The Cost Of Doing Nothing?

Wed, 12 Apr 2006 16:52:03 +0000

Malcolm Gladwell has an extraordinary piece entitled Million Dollar Murray: Why problems like homelessness may be easier to solve than to manage. In a lengthy and fascinating read he effectively challenges some of my previous thinking about homelessness as a wicked problem causing honest paralysis over difficult issues. Wicked problems arose in the area of public policy and are described as "a set of problems that cannot be resolved with traditional analytical approaches". It is the nature of wicked problems that unanswered questions and chronic issues can take years to work out or never be satisfactorily resolved.

Two police officers in L.A. made an informal calculation as to the costs of managing "chronically homeless inebriates" like Murray Barr whom they had cared for over many years.

...Johns and O'Bryan realized that if you totted up all his hospital bills for the ten years that he had been on the streets�as well as substance-abuse-treatment costs, doctors' fees, and other expenses�Murray Barr probably ran up a medical bill as large as anyone in the state of Nevada.
"It cost us one million dollars not to do something about Murray," O'Bryan said.

Gladwell discusses the research into homelessness by Dennis Culhane.

What he discovered profoundly changed the way homelessness is understood. Homelessness doesn't have a normal distribution, it turned out. It has a power-law distribution. "We found that eighty per cent of the homeless were in and out really quickly," he said. "In Philadelphia, the most common length of time that someone is homeless is one day. And the second most common length is two days. And they never come back...
...The next ten per cent were what Culhane calls episodic users. They would come for three weeks at a time, and return periodically, particularly in the winter. They were quite young, and they were often heavy drug users. It was the last ten per cent�the group at the farthest edge of the curve�that interested Culhane the most. They were the chronically homeless, who lived in the shelters, sometimes for years at a time. They were older. Many were mentally ill or physically disabled, and when we think about homelessness as a social problem�the people sleeping on the sidewalk, aggressively panhandling, lying drunk in doorways, huddled on subway grates and under bridges�it's this group that we have in mind.

Culhane discovered that about despite the size of the homeless population in New York, there are 'only' 2500 who are chronically homeless. Culhane's most startling finding was that New York spent sixty-two million dollars p.a. to shelter just those 2500 hard-core homeless. Studies in both Boston and San Diego reported extraordinary levels of medical and social care spending on similar high-need populations that confirmed the calculations made by Johns and O'Bryan in L.A..

The Link Between Love and Horseradish

Tue, 11 Apr 2006 17:56:01 +0000

Matthew Baldwin of Defective Yeti is one of my favourite bloggers. The guy would be a menance to traffic if he had a radio spot and I have long since given up drinking anything while reading his posts - I've had too many unexpected returns of tea/coffee/ginger beer that have burned or severely irritated my nose.

Matthew writes on a number of topics. He is an avid gamer and has made recommendations that make frequent appearances in both my own gift wish-lists (seriously, you still don't use these?) and my purchasing decisions for others.

One of Matthew's most frequent topics is his son, aka The Squirrelly. You will have a rough idea of Matthew's robust approach to parenting if I quote from the account of a recent check-up at the paediatrician:

So, yes, we're having the standard toddler War Of The Wills, but, fortunately, The Squirrelly is exceptionally easy-going. His tantrums are infrequent, and rarely last more than a handful of seconds. When we took him in for his two-year checkup, the pediatrician asked "does he ever have tantrums that last longer than half an hour?" and we were all, like, "Half and hour?! [edited] no -- if he did we would have just left him in your elevator, sprinted back to the car, and driven to Ontario at 85 miles an hour."

I've been reading the blog for some time, but it was only today that I came across the post where Matthew announced that he had attended an assessment centre where he and his wife were advised that The Squirrelly is probably on the autistic spectrum. The post has an anecdote about eating horseradish: it's poignant, funny and remarkably tender.

Caring for People With Medically Unexplained Symptoms: Kron's "Well"

Sat, 08 Apr 2006 15:02:44 +0000

Do you need to permission to be ill even when you have a brain tumour? A Year to Live, A Year to Die tells the difficult story of Stewart Selman and his wife, Rebecca Peterson, who cared for him. We pick up the story after Stewart's catastrophic diagnosis of a brain tumour. Rebecca admits that there were low-points during which she threatened to send Stewart away because of his behaviour.

The juxtaposition of compassion, grief, anger and love in A Year to Live, A Year to Die will be familiar to many carers. This may be particularly true for people who are caring for someone who does not have permission to be ill. Both the caregiver and the person with the medically unexplained symptoms (MUS) live with ambiguity and uncertainty. They may be caught in a dispute with employers, medical advisers, or benefit assessors because they lack the 'legitimacy' of a diagnosis. It is possible that the burden of this ambivalence adds to the impact of the severity of the symptoms. It is a common finding in research literature that people with MUS have more negative views about their symptoms and the impact that these have had on their lives than do patients with a clearly defined and potentially disabling medical condition.