Pushing them Down the Stairs - the Dark Side of Caring

Our friend Bill introduced me to his new girlfriend. She turned out to be a part-time carer in a care home, so I immediately started to pick her brains. She was cheerful,open, voluble and, it seemed to me, compassionate. You could see straight off that she was a good carer.

'Don't they just drive you mad?' she asked happily. 'The only reason I don't push them down the stairs is that I'd be found out'.

Like so many really important bits of information it was imported in the guise of a joke, and in time-honoured fashion I laughed back. It wouldn't have been in the spirit of the conversation to have pressed her on the subject. I rather wish I had. I'd have liked to have asked;

-How close to the truth that remark had been;
-Whether she had done such a thing;
-Or almost done it;
-Whether any of her colleages had;
-How she reconciled such thoughts with her caring philosophy.

I should have asked all these questions The trouble was that I didn't dare. Because I knew exactly how she felt.

Thus opens one of the darkest and bravest chapters in the Hugh Marriott's classic, 'The Selfish Pig's Guide to Caring'. I have been thinking about it for the past week, because of the case of Joanne Hill, who was sentenced to fifteen years for drowning her four year old daughter Naomi in the bath (the daughter had cerebral palsy).

My first reaction to the headline was; 'good.' I have grown sick of the rash of murders of children by their parents, the case of David Foster being only one in a growing list of these incidents. But as I read the various BBC articles accompanying the leader article, I grew more and more disturbed. This was not something that happened out of the blue. This was a gradual process over a number of years of severe depression, guilt over her child's condition and fear for her future,alcoholism and erratic taking of the medicines she had been prescribed. All the things in fact, which carers are extremely prone to and which they only avoid by those closest to them, watching out for them.

Being a carer is a different country. The gulf between the theory of caring and the practice, is enormous. It simply isn't possible to fully explain to a lay person, what it's like, and there is also a certain amount of badly concealed disdain for those who care. The phrase in the report that triggered this post was 'mild cerebral palsy.'

It's mild. What's the problem? Get on with it. Callipers are easy to manage after a while, and you'll get used to the staring. Don't worry about how your child's going to do at school,if she's going to get bullied, if she'll get a job, if she'll ever marry, what'll happen if you die before she does. And by the way, don't expect us, the taxpayer, to fund her care. Cerebral palsy isn't sexy enough for us; it makes you look funny. You should have had an abortion and saved us a lot of bother and money..

Mild.Mild. How patronising can you get?

But let's return to the subject. What did those around Joanne Hill observe about her behaviour?

- Her husband observed how she was depressed and would come home to find her drunk on the sofa and her daughter asleep.
- Her GP referred her to the local Mental Health Team after she suffered a severe relapse of her depression in Christmas 2006. In June 2007, they decided there was no need for further involvement, and batted her back to the GP.
- Her parents looked after her in Christmas 2006, when she left her own home for a while;
-Her childminders observed that she had a severe drink problem and on several occasions turned up drunk to collect Naomi.

Why could none of them see where this was going? For the same reason carers don't talk about pushing their loved ones downstairs; they didn't want to see it. They didn't want to admit that that abyss was there, looming and that Joanne Hill was getting closer and closer to it. To stop it would have involved tremendous upheaval and her removal from the house for her own sake. And it would have involved bringing up the difficult subject that Joanne Hill might at some point, harm someone she was caring for. Just mentioning it, is taboo. But to avoid the abyss, you've got to talk about it. You've got to name it and stare into it, to know where you could end up without support.

You might have noticed that this news story is over a week old. That is how long it took me to write on this subject; I never have before, it is so difficult. But I felt obliged to. The victim in this was a little girl of four, and I feel she died because no one could talk about the possibility that her carer might harm her. All carers know of this possibility. We all know that darkness. And if we could find the courage to talk about it, maybe Naomi would be alive today.

Close Encounters of the Third Kind- the Growing Dilemma of the Voluntary Sector

It's not a good time to be in the voluntary sector in health. Maybe it never is, but two stories have been rumbling on over the past few weeks, which illustrate the perils of being in this sector just now. One is the story of Kinloch Rannoch community, whose GP opted out and then retired in 2006. Tayside Health Board's solution to this, has been to attempt to bring in First Response, a volunteer service that specialises in on-the-spot defibrillation treatment, to replace the GP. Not surprisingly, this has met with a right royal raspberry from the local community. The second story is St Margaret's Hospice in Glasgow, which was asked by Greater Glasgow Health Board to admit a wider range of continuing care patients; not simply people that are at the end of their life, but those with complex mental health problems, and also nursing care patients.St Margarets has refused to do this, and is now looking down the wrong end of a £1.2million shortfall, as GGHB threatens to withdraw its funding.

What is interesting about these cases, is how each organisation has dealt with the NHS. There are three rules for a voluntary organisation that accepts public funding;
1. Know your remit.
2. Know the government's remit.
3. Do not let the two remits coincide, even if it means loss of funding.

First Response has a problem with its identity. It was set up by an RAF pilot, Scott Bateman,after the death of his father from a heart attack. The original idea of it, was to provide on-the spot emergency treatment from a trained volunteer to a patient, while waiting for an ambulance to arrive. They have a strong bias towards difibrillation treatment, and they tend to be centred round RAF posts, which are rural and the volunteers originally came from the RAF. However, things have changed as they have evolved.
First Response now recruit not just military personnel, but civilian personnel called 'community responders'.

First Response are acquiring their own set of vehicles; cars with markings almost indistinguishable from a paramedic's car. They are also setting up a scheme called 'Life Bikes' for operating in connurbations and rush hour traffic. This is a move away from their rural setting.

First Response have been granted the title of 'NHS Partner' and they display the NHS logo on their website.

I do not think that First Response is deliberately setting out to undermine the regular ambulance serices. But I think that the health boards have led them step by step into a situation where they will find themselves doing that, and it has happened because of their inexperience and because they were not clear enough on what their remit was.

By contrast, St Margarets Hospice in Clydebank has never allowed themselves to be mistaken for the health board. They know their remit; to provide specialist palliative care to the dying and judging by these minutes, they are not afraid to say so.

Palliative care comes under the quicksand banner of continuing care for the elderly. This can mean a dozen different things from a long term condition like Alzheimers, to cancer sufferers, to elderly with complex mental health needs. Their life span can be anything from a few weeks to a couple of years. What many hospices do to avoid confusion, is that they simply deal with cancer sufferers and neurological conditions such as Motor Neurone disease. St Margarets is different, because it will take people with other conditions as well, the proviso being that they are in the last stages of their illness.

Glasgow Health Board like other boards, has a problem with continuing care beds, and judging by the number of beds currently being discussed for the new Southern General, is going to have even more of a problem with these type of beds in the future. Hence their efforts to get the hospice to change its remit to what would amount to a nursing home. St Margarets has stuck to its guns, even although GGHB has threatened to remove funding. They have not allowed the health board to dump its responsibilities on them, and have not allowed themselves to become subsumed into a diluted version of professional services.

Perhaps the main difference between St Margarets and First Response, is age. St Margaret's has been going for 70 years; First Response has only been going for ten years. But it needs to heed the wake up call from Kinloch Rannoch if it is going to survive another ten. As for St Margaret's? Well, it's run by nuns. As Fr Jack probably didn't say; be afraid, Tom Divers. Be very afraid.

Big Brother is Watching You

First the good news. Richard Branson the bearded one, has decided to abandon his efforts to enter healthcare for the time being, Pulse reports. He says the reason is the current economic downturn and that this is the wrong time to be heading out on a new venture.

Now the bad news. The government is considering giving access to the computer records containing the postcodes, addresses and medical conditions of every man, woman and child in England. They have made the rather quixotic concession that a medic will have to have permission from the patient, but those outside the NHS will have access.

The most prized commodity in commerce is information. And this is the kind of information that companies like Virgin will need, to run private health concerns. This is already done to a certain extent through loyalty cards in supermarkets; these record what you buy and compare it to your 'customer profile'. This information is used by the supermarkets themselves and is also sold on to medical companies, insurance, holiday operaters and all manner of businesses. But at least there is a certain amount of agreement involved. You don't have to enter into the loyalty card scheme if you don't want to. And the supermarket only has access to those who already shop in their store, so it has limits.

This idea, however,is in a completely different league and completely outrageous. Perhaps the most disturbing thing about this report, is that it is short and low profile. I sincerely hope that the media give this idea the kind of bad publicity it deserves and doesn't wimp out on challenging the government on this. The information age and big brother is truly upon us..

Scotlands Drink Problem in Pictures

Do you want to know why Scotland has a drink problem? You need look no further than you r local supermarket. This is the scene that greeted me at Tesco yesterday;















Yep, right at the entrance. Three big bins that you can't miss; make it wine, because more women shop in here than men. Put it on the right hand side; most folk are right handed and it'll make it even easier.

Ok. I want to buy a wide screen telly. Oh, there's some wine that I can buy instead. What was it I wanted?
















I promised wee Jamie that I'd get him a pair of roller skates. Oh, there's some wine next to them; really convenient, that'll go well with the skates..




















Right, some bacon for breakfast and a morning snifter to wash it down..

















Nothing like a cheap lasagne full of hydrogenated fats to go with some Chasse du Pape.



















Right, I'll get some ice cubes for the Coke and lemonade that I'm buying. Oooh, wonder what ice cubes are like in wine?
















Why do we have a drink problem? Why is the number of women with a drink problem increasing? Send to Johnny Tesco Walker,The Ministry of the Bleedin' Obvious, Chardonnay Aisle, St Budweiser's-in-the-Square, Glasgow PST ASA NEWT. And the prize is a bottle of wine..