Take care - it's about the money

So the changes being brought in by the new health bill will save the NHS and save it money - hmmm .....

Meanwhile Devon is putting it's services out to tender now (even though the bill hasn't been passed) and two of the tenderers are private companies. One, Serco, already has a record of putting people at risk locally - in Cornwall. A child is reported as dying when it's on call service suggested putting him to bed rather than sending a doctor. The other, Virgin Care, is already in a legal dispute with the NHS in Yorkshire. Apparently it feels an NHS organization underbid it - pardon me, I thought that was what this was all about. And if it's care service is anything like it's train service was after it took over the main national north west route, I'd be pretty worried.

Devon is not alone in having jumped the gun implementing the governments health changes before this bill becomes law. It's a visibly and extremely unpopular bill - with doctors, health professionals and patients - only the politicians seem to like it. In their manifesto the Conservatives had no mandate for this bill. What they actually said about the NHS before the election was that they wouldn't interfere by making big changes as there was a need for consolidation. But of course money is far more important to them than care.

If my son were still alive and one of these companies were taking over his service, I'd be very, very worried. For me care is much more important than money. On behalf of the people who need the NHS, I am very, very worried.

It's not 'their' NHS to sell off - it's ours.

Death of Prof. Jim Mansell

I've just learned of the death of Prof. Jim Mansell after a protracted illness. And I'm greatly saddened though I didn't know him myself.

Prof. Mansell wrote the report 'Raising Our Sights' (amongst many other achievements) which was the report that identified how many people there were out there with Profound and Multiple Learning Disabilities, and how badly served they were by current health and social services. But he wasn't negative about it - although his report pointed out how poor the situation was, he also made sure that throughout, it indicated how things could be improved and gave solid examples of best practice which could be built on.

He worked at Kent University and set up the Tizard Centre there that does research into learning disability. People like myself, who had a child with profound and multiple learning disabilities as well as physical disabilities, have much to thank him for. He put our families on the government map. We used his report to justify asking for services for our son - and it worked. It gave us a respectable source we could quote that health and social services couldn't ignore - it proved it was Dept. of Health policy after all and they had no right to refuse us.

Thank you Prof. Mansell. We owe you, and you will not be forgotten.

Police and autism in practice

The Metropolitan Police have been found guilty of assault on a boy with autism and epilepsy who jumped into a swimming pool fully clothed. He is unable to communicate by speech and was restrained by handcuffs and leg locks during a school trip. They have also been found guilty of disability discrimination and false imprisonment. Despite the fact that they have been refused right to appeal by the court they say they intend taking it back to court, yet there is no sign of this incident on their news website.

The action sounds heavy handed in the extreme, and with no comment from the Met. I can only infer that they are too embarrassed to comment and just want this to go away. Things like this shouldn't be allowed to go away. The incident itself is reprehensible but if it's allowed to drift under the public view, it effectively makes this sort of action less of a worry for the police. They'll only stop doing it if they are forcibly told it's wrong.

It sounds to me that the whole incident could have been avoided if the police had dealt with the carers sensibly and not jumped in with both feet. The police should be the ones who protect vulnerable members of the community - not the ones who inflict the damage. This is the extreme tip of a big and expanding iceberg as more people with learning disabilities lose support through service cuts and come up against the law through 'inappropriate behaviour'. If they'd had the right support, I suspect the police wouldn't have been called in at all.

This is a serious matter, I'll be interested to see how long it stays on the BBC news front page.

The road to hell is paved with copies of the Sun

The Sun newspaper has a campaign going - 'Beat the Cheats'. The aim is supposedly to get members of the public to 'shop' people they think are claiming disability benefits who aren't entitled to them.

There are some real problems with this.
Many people have disabilities that aren't visible - many do not use wheelchairs. People with learning disabilities aren't always obvious. People with mental health issues are rarely 'visibly disabled'. People with many debilitating physical conditions may look OK to an outside observer. But the Sun, in it's wisdom, feels it's fine to brand these people as guilty cheats until proven innocent. This is little more than mob justice.

It's also very damaging to disabled people in general. It makes it acceptable to slag off people on disability benefits. It changes the climate so that people feel it's fine to point fingers at people and call them names - and this already happens in public. The Sun may say it doesn't condone this sort of vigilanteism but many of it's readers will take this campaign as justifying the sort of bullying and abusive actions that have driven more than one carer and disabled person to despair, or even suicide.

It also takes no notice of the many disabled people who, through pride or lack of information, do not claim benefits even though they are entitled to them - estimated to be significantly more money saved to the taxpayer than is lost to disability benefit fraud.

The Sun could have got behind disabled people and waged a campaign to get all disabled people the benefits they are entitled to. It could have changed the climate of public opinion in favour of humanity and justice rather than mob rule and vigilanteism. Maybe I'm hoping for too much from the organization that felt it was so far beyond the law that it was OK to hack any phones it liked.

It's major organizations changing attitudes like this that paves the way for the extreme right to say they have public support when they abuse disabled people in public. And if you think this doesn't happen, you haven't been out with a visibly disabled person lately.

Charged with being disabled

Is it right to charge learning and physically disabled young people for transport to schools when able bodied children get transport free?

Politically I'd have thought this was a 'no brainer' but apparently Lancashire County Council seem to think it's a good idea. Under their proposed new charging policies they're bringing in, disabled young people needing specialist transport to and from school are to be charged up to £1,200 a year for transport they've previously had free. This is apparently justified as it will help to make them more independent - not.

If you're an able bodied person who lives over 2 miles from school mostly you get transport paid for by the County Council.

I didn't quite believe it when I found out about this and was worried it might be someone misunderstanding and trying to paint things blacker than they were, but it really is true. In response to the formal consultation, the parents of young people affected are asking for this to be rescinded and are prepared to go to the Equality and Human Rights Commission if need be - I really do hope the politicians see sense and continue providing free transport before this happens. Being disabled is already more expensive than being able bodied. The people providing services for them shouldn't be making it even more expensive - and certainly not on the grounds of encouraging independence!

Disability workloaded

Thanks to one of my contacts for drawing my attention to one of the nastier bits of the current governments disability legislation - see Guardian article

They seem to be giving themselves the power to insist on disabled people being forced to take work at no pay while on benefits for an unlimited time. Now god forbid I'd want to suggest they wouldn't be sympathetic in implementing this, and I'm sure they'd not actually insist on really disabled people taking up jobs that would damage them, or terminally ill people having to work until they're given less than 6 months to live, or making disabled people work for less than the minimum wage straight away. But if they really are that humane - why do they need the powers to do all these things? The defence that 'we wouldn't actually use these powers that way' just isn't good enough. If they're not going to do it, they shouldn't make it legal.

There are a number of powers in the current governments health and 'welfare' legislation agenda that smack horribly of a desire to return to the
workhouse or worse. There are also even more sinister overtones which seem to want to brand disabled people as a 'problem'. We have seen this before - in the eugenics movement. Pastor Martin Neimoller famously warned of this.

Unfortunately he was wrong - First they came for the disabled. (Ultimately resulting in Aktion T4).

Wirral council fallout

So the politicians in Wirral are now arguing about whether they should force one another to resign over their financial abuse scandal.

But in the press coverage, the fact that the actual abuse and whistleblowing was an institution taking money it wasn't entitled to from real vulnerable people with learning disabilities seems to have got lost. Yes they are being compensated - reluctantly, after the council was ordered to by a judge, and they had to live in poorer circumstances while they were being cheated.

I don't really care which politicians resign - or not. I do care that this happened in the first place and I do want to see other councils make sure it isn't happening in their areas - and there isn't much evidence of this happening. My impression is that no individuals benefited from these people being cheated. It's just the finance department managed to save money for the council when it should have been social services in control, ensuring these people got what they were entitled to.

People should come before money, here concern over money took precedence over care for people. And politicians publicly battling over their own political skins without acknowledging what actually happened and who really got hurt, isn't very edifying.

NHS not for sale

I'm conscious that some of the people reading this seem to be from from America. It surprises me you'd be interested but you're very welcome. This weeks Panorama TV programme about poverty in America made me think how fortunate we are here.

I'm conscious there's a big health care and welfare debate over there and I'd just like to make the point that I'm not against the NHS generally - my son would never have survived without it, beyond a baby. Health and social services here, in the main, work. The issues I raise in this blog are about the failings any system will have - particularly big systems - and getting them put right. Many of these deficiencies are a result of current policies to move closer to the privatized, American model.

I'm a major backer of the NHS and social services and want it improved not cut back. Under a privatized system, even if my son had survived (unlikely), we would have been bankrupt long ago, and I wouldn't be able to afford a computer or internet access, so wouldn't be speaking here.

Health and welfare in Britain are a bit like the BBC. They do get things wrong but we'd be lost without them. If the 'Big Society' means anything at all, it's already here with everyone (almost) committed to making sure everyone has a decent chance in life - the NHS and social services are a major part of this.

Politicians doing what they promised

Politicians doing what they promised is rare - and not always good.

In Lancashire, last year, the County Council decided to cut services drastically over the next x3 years. They did last year (year 1) and now say they will carry on exactly as promised this year (year 2) to make even more and deeper cuts - but it's what they agreed last year, so no need for discussion.

This despite their having made, by their own publicity, more 'savings' than expected and having had a £50m windfall payback from the Landsbanki debacle. They justified their cuts last year by saying they were not set in stone and would keep them under review - there is no evidence of any review process, though we know of many actual cuts causing real distress. If major sources of unexpected income don't warrant any review, I'm not sure what would.

This council wants to cut services. It sees vulnerable people only as a drain on its resources, not an opportunity to be humane. Some people up here think councils should be a service, not a business. We are not customers, we're people.

The council is obviously Conservative, but I see little evidence of Labour objecting in any strong terms - their strategy seems to be 'let them do the nasty cuts and we'll be able to blame them when it all gets so bad we get back in power'. We are not voters, we're people.

I hate having my personality 'bacon sliced' into being a voter, a customer, a service user, a carer etc. etc. I'm a person and I'm bigger than any of these things. And sometimes I'm vulnerable and need help.

The shape of things to come...

After the abuse of people with learning disabilities in an institution - Winterbourne View, as seen on Panorama, you'd think that institutional abuse would get more publicity. But the financial overcharging of 16 people with learning disabilities by Wirral Borough Council - for which the courts have insisted the council repay £250,000 for overcharging since 2000 (with more to come from earlier), barely gets a mention.

There is a small article tucked away on the BBC website but little mention elsewhere and practically no 'pick up' by organizations such as Mencap - yet. Yet the implications are potentially enormous. The bullying of, and attempted 'payoff' of the whistleblower (which he turned down) are indicative of one problem which I suggest is as prevalent in many NHS and probably many Social Services Depts.. What is also an issue is that Wirral has been 'found out' whilst similar practices may well be going on in many other authorities.

I'm not suggesting this was a malicious or mendacious abuse, (though the people who were given access to these people's bank accounts indicates desperately poor practice). Rather that it flags up what can happen when the priority is to get as much income in and pay out as little as possible by an authority with control over vulnerable peoples finances - and finance has a higher priority than service quality or vulnerable people's rights.

The current climate of cost cutting is a ripe environment for more of this sort of abuse to happen when the finance is more important than service. If Wirral is the only Borough doing this, I will be very surprised.

And still it goes on ...

We had hoped for a little measure of closure as our son's specialist equipment was taken away following his death - but that would be too easy.

Our booked collection visit from the local Community Loan Store happened this morning, and now the adrenalin is running yet again. We'd carefully checked the various seating equipment, toilet chairs, hoists and slings against the list we'd been given and collected it all downstairs ready for collection. The men with the van arrived, took one look from the doorway and said 'not ours, not taking it'. There followed a tense 20 minutes of asking what they had come for (no answer) and who's it was if it wasn't theirs (and who we could return it to - no answer). In the end one of them (obviously some sort of manager) phoned in and was authorized to take it all. They seemed to want to blame us for having made his equipment last and it not being new stuff, and appeared to have no real idea of what they were supposed to be collecting - despite this visit being the result of a number of detailed phone calls and e-mailed lists. They were obviously stunned when told he'd had some of this stuff for over 10-20 years.

They did reluctantly, and with bad grace, take the stuff away. But left us angry and stressed. I really shouldn't have to get this assertive at this sort of time. For god's sake, I'm not stealing the stuff, I'm trying to give it back to be re-used (though I strongly suspect it will all be in a skip by this afternoon, despite being worth £'000). I suspect we'll now be contacted by someone with a different list wanting the stuff again because the paperwork is a mess. There is more stuff still to go.

The humanity in the NHS these days is being gradually paperworked and procedured out. We'll grieve properly when the clipboards and lists have gone away.

Time after

We buried my son last week. It was a good day - all about him, lots of friends, family and people who cared about him (some paid, some not - all cared). It rained hard, but he liked the rain - we'd take him for walks in it because he enjoyed it as long as he was well wrapped up and warm. So he had the last laugh at us being drenched - it would have amused him. And afterwards everyone went to the hall to see his photos and talk. And it wasn't miserable or depressing, even if we did cry.

We've cried more since - because we miss him, but he's resting now. No more reflux, no more fits, no more pain. And there were lots of good times. One mother said he'd packed more into his few years than her own son the same age, and even more than she had. It's never been about the quantity of life - it's the quality that mattered for him.

So we try to get back to 'normal' life. But that isn't happening yet. We've sorted his bank accounts out (what little there was), paid the bills, cancelled the benefits, notified the treasury, sent back his wheelchairs and a lot of other practicals - and this will go on for some time. There's another van load of equipment to go back next week, a track hoist to be removed, a mountain of clothes to be given away (some specialist for wheelchairs - many barely worn).

Some stuff can go to International Aid and the Women's Refuge but we'd hate to see his things just thrown away when they're in good condition. So we're finding homes for as much of the good stuff as we can.

I know it's early days yet and we will get things together eventually. Still in the 'busy' phase, see what happens later.

No room at the inn (or hospital)

I know it's water under the bridge, but I feel I need to spell out an issue we had before my son died - it needs to get better and if I stay silent it won't. This incident was not the hospital admission when he died but the one before that.

His breathing had been laboured for a day or two and he'd spent the Saturday and Sunday on our hospitals 'Assessment Unit', coming home each night. We'd been told to bring him back in if he hadn't improved in the morning. He had actually got worse overnight, so Monday morning we took him back. But this was Monday and there was 'no room at the inn'. Despite still having a hospital 'tag' on, his notes being on the ward, a medication line still into the vein in his arm, and his breathing being very distressed - we were refused admission because they were full.

We had to make a scene, using the magic words 'vulnerable young adult' before they would do anything - the result being that he ended up, very inappropriately at that point, in the resuscitation bay of Accident and Emergency - because that's all they had with the right equipment. The doctors there were hamstrung in treating him as his notes and 'treatment plan' were still on the Assessment Unit.

We were eventually moved to a ward about 4 hours later and did get an apology from the matron (after involving PALS - now known as Customer Services). He did respond to treatment but it was over a week before we were discharged.

I'm fairly certain that had this almighty cock up not happened, we would not have been able so readily to use our own nursing team on the ward or stay with him ourselves all the time. We were very conscious we were being treated with kid gloves after this fiasco, and it did help - it shouldn't have needed to be that way.

There are other stories around this admission I may post later but this is just presented here as yet more evidence that hospital isn't a good place if you're disabled.

Nothing finishes

I'd no idea how much there was to do when you lose someone. We had an 'end of life plan' - which my son totally ignored as usual, and lots of things in place to cope with his disabilities/illnesses, but nothing for afterwards.

So now we're busy. Certificates, arrangements, letting people know, mountains of admin., collecting his clothes, talking to his care team (because they lost him too) etc. etc.. None of these are all that important in the grand scheme of things - except the people - but they give us a focus and little things remind us of incidents with him - and I usually lose the plot about then.

I'm fairly sure I'll carry on being involved with people with disabilities, particularly PMLD (Profound and Multiple Learning Disabilities), just not sure exactly how yet.

There may be an intermission here, but I will be back. I may have to alter my title - I'm not a carer now. And I won't insult those who still have that role by keeping an honourable title I'm not entitled to any more. However much I've done, I don't have to clean the poo or check the medicines any more - and they do. Respect the carers.

An ending

My son died on Friday.

It wasn't anybody's fault. He'd had enough pain and distress and chose his own time to go. We had three days at home before he had to go back into hospital - things were hard for us but this time they got it right for him. We stayed with him and were allowed to do the bulk of his care, his own nurses came in and were a massive help.

I don't know where this leaves me yet, and to be honest, it doesn't worry me. For now, all I'm interested in is getting him settled, sorting out his affairs and remembering him - not in that order. We've had some good times going through his photographs and talking about the things we did. And we've cried a lot.

He was a big part of our lives, still is and always will be.

Back in the real world

Sons health improved enough to get us discharged from hospital. He was more at risk in hospital because of other patient admissions with serious infectious conditions, so we got out rather earlier than I think the doctors would have liked. Still, they weren't doing anything we can't do at home, and at least he's in a more familiar and supportive environment (and my wife gets to sleep in a bed rather than a chair, and has the luxury of a shower) at home.

I often feel guilty about the weight of responsibility and sheer work and stress she gets through when he's ill. I try to do as much as I can, but the reality is she's better at it than me and certainly knows more, (she has a medical background and inevitably did more of his care when I was at work) so I tend to follow her instructions. He was ill enough this time for our daughter to travel back urgently - whatever she thinks, her support was very welcome and helped us a lot.

So, we're back home, though he's not well yet. And the next set of issues kick in - staff shortages (holidays and illness) mean we're missing nursing shifts and also don't know if the nurses will be allowed to work at our house until he's well enough to move - we may be back unsupported until he's well again. The iller he tends to be, the more problems this gives the support services - so the more we have to pick up at the hardest times. We will survive this - we just won't know how until afterwards.

I'm very conscious that there were a raft of what others will see as horror stories during our stay in hospital, and will spell them out once the dust has settled. For the moment, I'm just grateful we got through this admission with a son.

It's hard in hospital

Still in hospital. Original problem resolving - slowly. Secondary problems of disability spin off problems now to be dealt with. The critical ones are the medical ones, mainly drug side effects/undesirable impacts of necessary procedures. But a significant number involve the inability of hospitals to understand the impacts their organisational procedures have on disabled people and their carers - and there are lots, some more serious than others.

They range from the irritating - poorly organized car parks locking in nurses cars because no one is manning the barrier 'intercom' late at night - to the high risk - urgently needed epilepsy medication being delayed for 2 hours because of the administrative procedures required to sign it 'in' and 'out'.

Will probably elaborate further once he's out of hospital. Just now sleeping is my second highest priority.

Hospital can damage your health

Short post as son in hospital - severe chest/breathing problems.

Despite all supposed words that things are getting better, admission was a nightmare - again. We've had apology from matron but that doesn't improve his treatment or obviate the delay or stress caused. Will take it up later - at present main concern is to get him better.

Hospitals are still not geared up for disabled people. They cater for 'normal' people who are ill. However good the people, the system is a mess.

Professionalism - or not

In the mess of my son's care package review, one particularly irritating shambles was a very poorly written assessment by someone who had barely seen him, but as a professional, had the status to make judgements on the basis of little or no first hand information. We complained about the assessment and sent in our own comments, particularly on some critical omissions and one near slanderous statement. (Probably actionable, had we the energy.)

We've just had a rather grudging apology from the boss, but in the same post, a 'signing off' of his 'case' by the original offender which in turn seems more concerned to label us as unhelpful than to consider our sons actual disabilities.

This really irritates me.

We cared for him pretty much alone for the first 18 years and it's taken us the last 10 to get a care package together that might outlast us. I feel this should give us some status as experts in his care. I certainly feel we know him better than someone parachuted in who only met him (and then under pressure - they would have been happy to have done the assessment from paperwork and second hand comments alone if we hadn't insisted on a visit.) for half an hour.

But this person is a 'professional' and has official status. As carers we don't.

It's bad being ignored. It's worse being actively discounted. It's abysmal when the paperwork is more important than the care.

Disabled and tarnished

So the Low Review into the effects of stopping Mobility Allowance for people in residential care is out. It's a good clear report, setting out the evidence and making the case well for not taking this critical benefit away. (The 'easy read' version - designed to help people with a learning disability is particularly worth commending.) Thanks must go to Lord Low for carrying it out independently and to Mencap and Leonard Cheshire for setting it up.

We now wait to see whether Maria Miller and the government will take any notice of it. They have set up their own very low profile internal government review so they're obviously not just intending to take the Low Review on board as stands.

The thing that really worries me here and might swing the governments response into making this invidious cut, is the general background media articles and TV programmes that publicize benefit cheats as the predominant face of disability. These media forays put disability and benefit scroungers together, making the two closely associated in the public mind. This sort of presentation doesn't actually accuse disabled people of being benefit cheats, but it does bracket them together - and that's wrong. And it can cause substantial damage.

We need to make sure people understand that real people have real disabilities and desperately need things like Mobility Allowance. If we let this association of disability and benefit cheats take hold, the government could play on this as public opinion being for the cut. These views are out there - see the talk forums, even on the Low Review site itself. However much we know they're wrong, we have to acknowledge the views exist so that we can mobilize opinion against them.

We don't want the image of disabled people tarnishing.