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Tomorrow is the meeting where we'll be told we definitely can't have the nursing care at home that was effectively withdrawn last week.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.

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.

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.