The sound of one scissor cutting

There's something going on, that we're not being told about. That's we here rather than people at large. Our son's care package is a complex 'shared care' arrangement where ourselves and x2 charities all do some of my son's care in a co-ordinated whole. It's jointly funded by Health and Social Services - or at least no one told me anything had changed. But we've just heard on the grapevine - no official contact - that someone at the Health Authority is instituting a re-assessment of his care (no change of circumstances have prompted this) with a view to bringing it all under 'continuing care' funding.

I don't know the full implications of this but I do know it will have an impact - e.g. Direct Payments and 'Personal Budgets' aren't applicable to NHS funded care - and 'continuing care' is NHS funded. On top of doing his care and sorting out the other issues, we'll now have to start looking up all the implications of 'continuing care' funding. I don't have time for this. And I'm really worried it's being instigated with a view to saving money and cutting services - especially as it seems to be happening behind our backs.

I'm starting to get perennially paranoid - but I think they really are out to get us.

Bracing myself

I am really the shy retiring type. But having a disabled son to care for changes you. I haven't done the assertiveness course most of the professionals we deal with have been on, but I have had lots of experience - and tomorrow I'm going to need it, again.

Tomorrow is the meeting where we'll be told we definitely can't have the nursing care at home that was effectively withdrawn last week. (Yes I know this is backwards, but this is CQC, NHS, Social Services, provider networks etc. Alice through the Looking Glass land - it's also complicated as we do have some care 'on a different basis'.) Anyway, I have to brace myself and we'll probably end up playing Mrs. Nice and Mr. Nasty again. We do this quite deliberately these days - we need Mr. Nasty to stand up to the authorities and Mrs. Nice to maintain our relationship with these people so the service can continue between crises.

This is a very cynical way of operating and I heartily dislike it - I even disapprove sometimes, but in all this the 'prime directive' (thank you Star Trek) is the best care for our son. And if it helps us hang on to a good care package, I can live with my own disapproval. For CQC the 'prime directive' seems to be seeing that the box has been ticked (though they force someone else to tick it), for the NHS it seems to be spend as little as possible but avoid bad publicity (as the lawyers cost more than the service), Social Services have fewer qualms - they just want to save money at all costs, (to hell with the publicity, the press shout at them anyway).

To them it's all a complicated 9 to 5 game they get paid for playing. To us it's real life. We've won in the past because we tend not to stick to their game rules - it always seems to surprise them for some reason. I think it may come to that again. The fact that they're playing Monopoly and we're live, also helps - it can even be surreally entertaining occasionally. It must be very difficult dealing with people like us. Tough, give us what we need and you won't have to.

Beating his chest

Chest infection continues. Bit of a worry really as he still has some spots etc. that usually clear up with the antibiotics - doctor feels he's quite run down. Presumably infection main is viral and antibiotics are just breaking up any bacterial secondary infections. It's up to his immune system to clear the viral part. Physio helps clear gunk - particularly the stuff he gets on the trampoline a couple of times a week with ordinary and PEP (positive end pressure) mask in between.

The physio he's had has been a literal life saver as the recurrent chest infections would have taken over long ago had it not been for this progressive and intensive physio regime. Unfortunately none of it is provided by the NHS - the charitable service provider that does his day care employs a specialist physiotherapist full time for the people they deal with and it's pretty much down to him - we owe him a lot. When he took a well deserved holiday, all the NHS could provide was two basic sessions a week and they were unaware of PEP and unable to do the trampoline physio. The people were well meaning and good as far as they went but it worries me that the mainstream service is so poorly trained and overstretched these days.

Back to relying on charities - come back the workhouse, nothing is forgiven.

We are not alone

The lady who went on hunger strike (Mrs Cavill-Burch) over lack of care and support has my sympathy. I can hear the public now - 'this can't be happening in our society in this day and age' - but it can, and it does. It did to us for 19 years. We have a service now, but like her spent many years suffering acute sleep deprivation. At one point a District Nurse confiscated our car keys as she felt we were too tired to drive safely - but it didn't get us a service. We didn't try hunger strikes - just didn't think of it - maybe we should have. We got our service after much shouting, embarrassing the local Authority and NHS in public and setting it up ourselves with the help of two local charitable providers. I suspect there's little help we can offer Mrs Cavill-Burch other than to say the publicity, though painful, may be enough to start the services off, but it won't just happen. If we can help, get in touch. For news report see BBC at http://news.bbc.co.uk/1/hi/england/cambridgeshire/10547319.stm

This subject is being raised in Parliament on 13th July at the All Party Group on Learning Disability meeting. The Raising Our Sights report is being presented there and for once spells out how big and bad this issue is. There's a copy on the department of Healths own website at http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_114347.pdf

We are not alone, we're isolated. There are a lot of us out there but we're trapped in our homes doing the care, and are invisible. And the services (NHS and Social Services) find us too difficult to deal with because it is hard. So they ignore us, in the hope we'll keep quiet. And on top of this - the cuts are coming.

Hospital makes you ill

Sunday went rapidly downhill after lunch. Lots of bright sun and happy people sitting outside pubs. But we had an appointment with a neurologist at the hospital. (They're so far behind, they have to do weekends to catch up.) It was on time, so that was nice, and it lasted about 10 minutes. And in that time he managed to check my son's medications (x2 pages of complex anticonvulsants, antibiotics, asthmatics, etc. etc.), assess his stability and decline to support us in keeping him out of hospital. We have 27 years experience of dealing with my son, the nurse (who was also there) has worked with him for over 3 years and this consultant has seen him twice for probably half an hour in total - so he's obviously much more experienced than we are.

His epilepsy has never been that well controlled - 5 fits a day is fairly normal, he rarely has a fit free day. We have a complicated set of management/treatment protocols involving 3 fairly heavy duty drugs when he gets really ill and his fits threaten to go out of control. He doesn't cope well with hospitals, often communicating by increased numbers of fits and worsening asthma as he gets increasingly stressed. His medication timing gets buggered up by the ward rounds and the ward nurses are untrained in his specialist care e.g. gastrostomy etc.. Hospitals are geared up to look after ordinary people who are unwell, in our experience they don't cope well with disabled people or those needing management of a long term condition. (See Mencap's Death by Indifference report.)

What we wanted was some support on how to manage him at home when he got ill - what we got was a blank refusal to even discuss it. He didn't want to know about the fact that we had 24/7 nursing care, or even look at the elaborate protocols we've worked up over many years with the specialist epilepsy nurse, his GP and a host of other professionals. 'If he goes into status, some people die of it, so he has to go into hospital - otherwise I'll get disciplined for not following the guidelines.' No conversation about what would be in the patients best interest, just a blanket covering his back statement of policy. Medicine these days seems to be more about protecting the practitioner from being sued than looking after people.

I came out feeling depressed - now it's sunk in I'm starting to feel angry.

Too many meetings

I have to do meetings or the 'powers that be' creep up behind you and say "..but we discussed that last month and you didn't object..." but sometimes it gets just a bit surreal.

Went to a Good Health Day with the NHS - supposedly all about the best way to deliver health services to people with a learning disability. Great chance to get the protocols and training for airway suction, gastrostomy changeing etc. sorted out ....except... the leader of our discussion group wanted to spend the time talking about whether they should put easy chairs and magazines in the Learning Disabilities Health Teams waiting room - if they decide to have one ..... I think bemused was the general atmosphere. We did manage to get some positive things agreed about hospital procedures and practices but it's a bit like pushing water uphill.

Also had to go to a Learning Disability Partnership Board - supposed to involve carers and service users in strategic decisions about services. As we've just had our local 'Board' merged in with two others, however, the whole meeting got restricted to discussing 'Terms of Reference' and every time someone (carer or client) raised a real issue such as "how much money was there for advocacy?" or "to what extent are you (Social Services) planning for the increased numbers of complex care cases?" it was stamped on by the temporary chair (Head of SS Commissioning!) as 'a possible theme for a future meeting' and ruled out of the discussion.

This sort of thing is fine for the paid officers but carers and service users have things to do and don't get paid to spend five hours at a time attending meetings like this.

If it is broke, do fix it

A small piece of plastic on my sons suction machine (to keep his airway clear) broke last week. It got reported to the Community Loan Store who sent... the wrong bit. So they were rung up again ... and came and looked at the wrong bit, saw that wasn't broken and went away ... leaving it still not working. They've been called again and we've marked up the broken bit with tape - like Harry Potter's broken glasses ... maybe they'll get the message this time. This isn't some luxury gadget - it's a life critical piece of equipment. If this had happened in a hospital there would probably be a full blown inquiry, but out in the community it's seen as just another hassle by the Loan Store, who frequently take the phone off the hook when it gets too busy. Now I have lots of sympathy that they are overworked and under resourced, but these things are important.

This week his gastrostomy tube (he's fed directly through his stomache wall) failed - they only last a couple of weeks anyway, so the nurses asked for a slightly early replacement. And they got an earful from the dietician telling them how expensive these things were and how it was going to affect her budget (they cost about £5 each). Without a tube he can't eat, drink or get medication - what are they meant to do? They and we shouldn't have to worry about someones elses budget problems. After all, she is paid a salary to manage the budget, and she isn't going to die if she's £5 overspent.

These are just the current examples - there's always one or two problems like this we have to sort out, on the go at any given time. I dread to think what it would be like if we were on Direct Payments and had to source all his equipment, buy it and maintain it on top of caring.

Filling the nursing gaps and looking back

Had a really good weekend. We have an old workhouse near where we live that I've done some research on, and this was the weekend we'd persuaded the local archaeologists to do a quick 'Time Team' on it. We do actually have a life as well as being carers. We got stuck in with them and had a really interesting Saturday - Sunday was a bit restricted as we had to collect my son as no nurses available to cover the shifts, but he seemed to enjoy bumping around the field and the fresh air. He wasn't too impressed with having to get up for a 9a.m. Sunday start and going back after his bath at 10p.m. but I think he had a good day.

It's a bit strange researching a workhouse when you have a disabled child. Back in the good old days of Mr Dickens and Queen Victoria, when Britain became Great Britain, my son would probably have ended up there, if he'd survived at all. Their official classifications of mental disability and illness were a bit less PC than ours - deaf & dumb, imbecile, idiot and lunatic. One day I'll grit my teeth and look up what they actually meant. Thank God for the NHS - even if it can't get his shoes sorted out. Those were the days when things really could only get better.

All God's children need shoes

At long last it looks like my son may be getting his shoes - soon but not quite yet. The tops are back from Lithuania where the NHS get them made, and they now fit - at third made to measure attempt. They just need soles - apparently Sheffield, and then he can have them. We only got to this point by putting in a formal complaint - it worked but should it have to be like this? He's been without shoes that fit for two years while this hasn't been sorted out. We thanked the lady 'for kicking some arses' but got a fairly blank reaction - she just seemed relieved we weren't taking the complaint further - why would we, all we wanted was the shoes all along, blaming someone wasn't an objective.

Hands off our nurses

The nurse recruitment saga continues. We're having difficulties getting nurse applications, mainly because it isn't your standard ward nurse job and as a one client team, we're too small to be seen by most nurses. So whats the obvious thing to do - advertise where most nurses work - hospitals. Oh no you don't says the hospital manager. They're our staff and we're not letting you poach them.

Now what we're talking about here is two part time staff - it's hardly going to close down the hospital if we're successful, and anyway the care package is ultimately funded by the NHS. But it gets better - the hospital trusts (in charge of the hospital) won't talk to the PCT (in charge of community care/nursing). Meanwhile we're two nurses down (half my sons contracted team) and nobody knows (or cares) about us.

I think there's going to be some 'accidentally dropped' leaflets quite close to the hospital noticeboards soon.

Where are the magic shoes?

We had to make a formal complaint to get any action on my sons shoes. (All gods children got shoes - so maybe he's on the NHS's side after all!) We've been waiting years - but we've just been informed that they are on their way back from Lithuania (?) and we might get a consultation in a couple of days to see if they fit. Why does it need to get to this level before anything happens. We had the same with his seating system, his wheelchair etc. etc. I'm only a serial complainer because I have to be - nobody takes you seriously until you shout.

Where are all the nurses?

We have a small nursing team - great people, just not enough of them. Of the four contracted posts one gave up work and another was injured, now another is going on holiday. They are entitled to change jobs, have holidays and have accidents and I don;t begrudge them at all. But can we get replacements? We can't even get applications for the jobs. It isn't standard nursing but it is rewarding but it's almost impossible to get visible to nurses looking for work when the local hospitals etc. won't allow you to use their noticeboards or networks to advertise - they're afraid we'll poach their staff! It's the NHS that's paying anyway. Anybody out there looking for work?

Shoes and nursing

So, my son needs new shoes. But he needs special ones, we've been trying to get them made for at least two years now. He has three pairs - sandals, not ideal in winter, one pair that damage his toes so he doesn't use them and one pair that are two inches too long. So he has to wear them or his slippers. His new ones have been measured three times and arrived wrong each time, the current attempt is being made for the NHS (National Health Service) in Lithuania and won't be back in Sheffield (why Sheffield it's 80 miles away?) for another 2 weeks. Maybe they'll fit this time?

He has a care package but we've just been told the registration doesn't allow the nurses to work at our house - so major meeting next week to iron out what to do. He comes home if he's ill to keep him out of hospital - so just when he needs nurses, he can't have them. Oh, and if he comes home that also means we have to do the waking nights as well as days - he has fits and needs his airways cleared at night as well as during the day. So much for sleep next month.