Friday, May 28, 2010

Chilling out

To be fair to wheelchair services, they did come and mend the damaged wheel the day after we rang them. Replaced it in fact, also replaced the other undamaged one - not sure why. Anyway, obsolete one retrieved, current one mended, all's well with the world.

We've had him back at home with us for a couple of days and for once he's been on quite good form. Not too many fits, sleeping a bit erratically (but that's not unusual) and had some very relaxed evenings with him just sitting with us watching TV in the dark. (He is photophobic, so we often try to keep the lights down, using his stained glass window for illumination.) It sounds quite boring but in fact it's not. The quiet times are fairly unusual as it's usually quite busy dealing with fits, airway suction, tube feeding, medications, toileting, bathing, changing position for pressure relief etc. etc.. We treasure these times we get him to ourselves and he isn't too ill and I think he likes the chance to chill out a bit now and again. When his sister's at home, he just sits there and looks up at her - it doesn't need any words.

Oh, and we've had some nurse applications - big celebrations! Lets hope they're OK.

Monday, May 24, 2010

What to do when the wheel comes off

We were just starting to calm down after the depressing hospital appointment when we got a phone call. The wheel's come off the wheelchair! So back in the car, mad dash with old chassis (which we had carefully hung onto in case of just this sort of eventuality instead of letting wheelchair services skip it) Try to mend wheel but find they've fitted different wheels from the ones in the manual and these aren't fixable. Ring the 24 hour call out number - which turns out to be an answerphone to which message we get no response until this morning.

The nurses and carers had in fact acted 'above and beyond'. It happened while he was out for a country walk and they organised to get his van out to him, jury rigged the wheel and got him home into his easy chair. They tried to fix it but they weren't able to either.

Wheelchair services didn't act 'up to or at' let alone 'above and beyond'. We've been asking them to talk to us about fitting kerb climbers as we have to drive in the road much of the time. The chair is too heavy to get up a normal kerb with its small castor front wheels. We've been ringing for some weeks now but no one returns the call. Until of course, someone hits a one inch partially lowered kerb at a slight angle and the front wheel falls off. The sequence seems to be - don't return calls, don't have a real emergency call out, only react when something drastic happens that could be legally actionable and then give an appointment some weeks ahead.

I don't really know how to refer to these people nowadays, Wheelchair service seems to be the wrong word. I know what I'd like to do to them sometimes.

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.

Saturday, May 22, 2010

A voice from the wilderness

In the spirit of the new Health Minister's promise to read one in fifty, randomly selected letters to the Department of Health, I've e-mailed him (Andrew Lansley, Health Minister and Paul Burstow as Junior Minister for Care Services) suggesting they follow this blog to get a feel for what it's like on the front line. I just hope they don't simply try to use it to try to discredit the concept of Personalisation - you'll be aware that I'm not a big fan of Direct Payments and Personalisation myself but that's not because the ideas are bad, it's simply that -
  • Direct Payments aren't right for us - we spend all our time doing the care and don't have the time left to do all the admin/staff stuff etc. involved. They are great for some people.
  • I feel Personalisation has been hijacked as a 'one size fits all' solution and is being used simply to cut services and costs by Local Authorites - as often Conservative as Labour (or even Lib Dem). It's the way it's being bastardised in use, not the concept that is wrong.
It'll be interesting to see if I get any reaction - here's hoping. If just a few people in the Department have a surreptitious look now and then, it will have done something for awareness - and if you're doing it now - welcome, just check over your shoulder!

Wednesday, May 19, 2010

String, paint and bicycle chains

We've just redecorated our bedroom - so what's that got to do with complex care? Well quite a bit actually. It was last done in 1997. OK, so I'm pretty good at avoiding DIY when I want to, but not really that good. The fact is our lift (a very old but good 'Terry' lift that is manually operated using a long bicycle chain and lots of very strong string - really.) comes through our bedroom so we can only decorate when he isn't there for long enough to get the job done - and that's how long it's been. The last time we decorated was when he stayed at a children's hospice for a week. Caring really does get in the way sometimes. On the plus side, I might get away with another 13 years!

P.S. Social Services bought us the lift about 20 years ago - they own the machinery, we own the hole. They'd like us to replace it with an electric one but we actually like it. It's very eco-friendly, using hand power, it even works during power cuts and there's very little to go wrong with it. Sadly they don't make them any more but we've got very attached to ours. It's a very simple platform that's counterbalanced by lead weights in two supporting pillars, and operates on the same principle as a sash window. I suspect Health & Safety would turn blue, yellow and green with purple spots if we wanted one nowadays but it works and does the job. Not everything has to be expensive or complicated, though I suspect the original Ned Ludd might still have disapproved.

Tuesday, May 18, 2010

Once more into the breach dear friends

So what happens when a nurse, for very good reasons, has to ring in just before her shift to say she won't be able to get in? Well, in an ideal world there would be a contingency plan - and there is - and it doesn't work - again! This time we didn't step in to fill the breach ourselves, as usually happens. Because nobody told us it had happened - we only found out when we rang to see how he was. There was a fallback but in our view it was inadequate, so brown stuff hit fast rotating object again. Fortunately all was well and he behaved himself for once.

Our package of care predates the 'Personalisation Agenda' - it doesn't need things like Direct Payments to get a Person Centred Plan, even under the old systems - they just make it hard (translation - impossible). If we'd had Direct Payments we'd have had to organise all this as well as doing his care and I don't think we could cope with that level of admin. as well as the medical etc. care. There's no allowance for recruiting, staff admin., contingency cover organisation etc. - Personalisation for us would mean care on the cheap (for the authorities). It would save them money, because we'd have to do the extra work. The reality would be that we'd step in all the time - unpaid.

Friday, May 14, 2010

Nursing by numbers

Once upon a time we had a really good relationship with our nursing team - we were an equal part of it and any issues got sorted out informally. But now everything has to be recorded and be seen to be done 'right'. We have to have written protocols for everything - even cutting his toenails. I know we don't like it, I'm fairly certain the nurses don't like it and I'm not even sure the managers like it. I know it's well meaning and supposed to ensure that mistakes don't get made but it actually feels more like it's there to protect the authorities from being sued than for giving my son a better service. The nurses can no longer use any discretion and seem terrified that doing anything outside the written protocols, even if it's in his best interest, could lose them their nursing PIN number. The result is they have to get someone else - usually us - to 'sign off' any departure. He gets a less responsive service, the nurses are unhappy and feel devalued, and we have to take responsibility for everything - even sometimes things we're not happy with because the alternative is worse. I'm not sure who really benefits from this litigation/blame culture but I do know it's a real step backwards and discourages people from 'caring' in the simplest form of the word.

'I was only following orders' is generally accepted as a discredited excuse. 'I was only following the protocols' needs to go the same way.

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.

Sunday, May 2, 2010

Not broken, just crap

Minor panic last night from nurses. His feed pump had been running all day showing the right amounts given - except, when they opened the pack up in the evening, no actual feed had gone through. He hadn't had any feed all day. The pump is supposed to alarm if nothing is going through - but it didn't, it just said it was pumping. Nurses tried to identify problem but in the end my wife had to go over there to sort it out. It took her a few minutes to find the problem - a kink in the tubing before it got to the pump. To be fair to the nurses, they should have been able to rely on the machine to warn them. The only reason my wife sorted it out so quickly is because it has done the same thing to us before - it isn't meant to. N.B. This machine isn't broken - it's just very poorly designed.

We've put in 'yellow forms' about this before but are still stuck using crap hardware. Net results are that my son went a full day hungry and couldn't tell us, the nurses felt guilty they'd let him down (they hadn't), and we missed a planned evening out.