Bitchy and scratchy

So much fro getting a life. This week looks pretty heavily booked already. All day Tuesday, all day Wednesday and Friday morning committed to meetings with County Council about cuts. Friday afternoon and this morning going through sons 'social care assessment' that's just arrived. (Still waiting for health care assessment - current timescale is now 3 to 4 months due to unavailability of staff.) So we've got this afternoon and Thursday to do everything else. And somewhere among all this is our sons care - which is not insubstantial and the most important thing of all.

I did get to chop wood yesterday - may fit in a bit of soldering this afternoon (I like soldering).

Son seems in reasonable health just now, slight chest infection coming under antibiotic control and scalp psoriasis settling down with gentle care. This psoriasis gets me down sometimes. It's quite severe and gets a lot worse when he's ill or stressed - and he can't tell us or scratch it himself. We just have to watch it really carefully and treat it quickly but gently. I can't really imagine how distressing it must be to have an itchy head all the time and be unable to do anything about it. I know it's theoretically one of his more minor problems but it must have a fairly major impact on his quality of life - that's why we get so concerned about it.

Anyway, back to the paperwork/meetings - I retired to get away from that - didn't happen.

Got to get a life

I've had some salutary advice from someone I trust implicitly today. I need to get a bit of a life outside disability for my own good. They're right. I can't stop the caring, but our son's not too bad just now. Worrying about the cuts, going to meetings about them, campaigning against how they will affect him and his friends, writing to MP, councilors etc. has pretty much taken over of late. On top of that there's the perennial current issue with his care package - CQC v care service provider v nurses etc. - getting dealt with. All in all it is pretty much my life just now - blogging here is relatively light relief.

There's not a lot of joy about just now.

So I'm going to do something about it. I'm going to do a few of those things I used to enjoy a bit - something every day just because I want to - even if it's something small. I'll still have to go to the MPs surgery tomorrow and I'll still have at least x2 full days next week at 'cuts' meetings being held by our local Council, I'll still have to meet up with his care manager to sort out the present issue, ... but I will do something else as well.

If I get behind with the blog, apologies in advance - I may be doing something that's actually more fun - if I can think what that used to be ....

Health but not wealth

Had a good couple of days with our son over the weekend. Took him out shopping in the morning, country walk in the afternoon and to a local 'family games' evening on Saturday. he stayed awake and alert right through. For him this is a real achievement. He had a good lie in Sunday i.e. didn't surface until late afternoon (including the most chilled out bath you could imagine). Oxygen sats high throughout. Apart from being on antibiotics for a bit of chest infection and the accompanying 'thrush' his health is really not bad just now (grabs frantically to 'touch wood').

Meanwhile, on the cuts front, his review seems to have gone into freefall now that we've asked to see a copy of the assessment being taken to panel. It should have gone today, then seemed to be delayed for 3 weeks and now looks in the medium to long grass. I can only assume they were worried that what they were proposing wouldn't stand up to scrutiny. I have to say that they were quite unhappy we wanted to see the assessment at all and were very reluctant to accept we had any rights - I think 20 years caring full time with no help, 8 years with some support and being his parents and main advocate give us some authority in this.

I also note that word is also coming out that on top of the front line service cuts being implemented, the back office savings are also emerging. If we delay long enough, I don't think there'll be anyone left in Social Services to do our assessment. I don't feel any happiness that many of the social workers and commissioners look like being out of work. We may not have liked some of what they had to do, but I do feel their hearts were in the right place - they were just never given the resources to do their job properly and had to spend most of their time fighting a rearguard action that endeared them to no-one. With service cuts and job cuts we're going to be on the same side of the barricades soon.

Mumsnet lady

The number of people reading this blog has suddenly shot up - no doubt due to the publicity around Riven Vincent whose disabled child is being denied help by her local council because the government has cut the councils budget, so I feel obliged to comment.

I don't know all the details but I recognize the situation. We had similar battles with our local authority and it wasn't until our son was 18/20 years old that we got anything like an adequate service - and that after years of fighting and distress. Not everyone has the support we did and I feel for the family. I often feel guilty that we got a service when I knew others weren't - that's partly why I do this blog. We have to make it better for everyone. Riven should not be put in this position, now she's in it she must be helped out with a better service, and the government and councils must be made to provide these services for all who need them. We need all of you to help - there are lots of Rivens out there who haven't been pushed quite as far, and a significant number who've been pushed further. Mr. Cameron talking directly to her isn't a service, it's a PR job - she deserves a service. The cuts are making this worse and he's presiding over them.

On a side issue, we also had to deal with the press when our son was little - not on quite this scale. It wasn't a fun experience, we didn't want it, it got in the way, they told lies (not nasty ones, they just made things up), it didn't get us a better service and I see the press now as very much a last resort. Publicity like this may help this 'cause' in the long run but I hope it doesn't hurt the family as much as it did us - it isn't an option I'd choose and I suspect it isn't one they chose.

Cutting out the insects

Just had a phone call with our sons nurse. She'd taken him to the zoo - on a wet, northern Sunday afternoon - great success in fact. He was really alert and because they were the bulk of the people there, he got to have stick insects and skinks (some sort of reptile) crawling over him. He really enjoyed it and took a lot of notice. This for him is really good. Finding things that get his attention can be quite hard and dispiriting sometimes, so these days are to be greatly celebrated.

We'll make the most of them while we can. He went there in his wheelchair adapted van bought and run using his Mobility Allowance - and that's being taken away next year, thanks to this compassionate government of ours. I'm currently looking at how their proposals for DLA will affect him and am getting increasingly alarmed that because he's part time in registered care, he'll lose that as well the year after. Depressing.

One month to heartbreak

The One Month Before Heartbreak campaign is under way. It's Valentines Day next month and the government's consultation on it's disability cuts ends that day. They want to cut DLA (and other things) that disabled people rely on. These are not benefit scroungers, they are real people with real disabilities, people in wheelchairs, people with learning disabilities, people with mental health problems, complex care needs.

My own son is affected by the cuts - he's in a wheelchair, pump fed via a gastrostomy, cannot speak, needs his airway keeping clear constantly, many fits a day, oxygen support etc. he is very visibly disabled but his care and support is still being cut. There are lots of other stories on The Broken of Britain website if you're still not convinced http://onemonthbeforeheartbreak.blogspot.com/ . Write to your councillor and MP about it - tel everyone you can what is really happening. Go to the 'consultation' meetings and make your voice heard - if you're a carer or disabled, it will affect you. If you're not, we need your help - please.

This government has started these cuts, the Lib Dems are colluding and Labour seems to have lost its tongue. So we have to speak out for ourselves.

We will be presenting our politicians with a bunch of red roses - each one tagged with a cut that affects us. The card will read 'Being disabled isn't a bed of roses, cutting off the roses leaves us just a bed of thorns.' We'll cut off the heads before we hand them over and read out each cut to them. You may want to do something similar.

I know it's only a gesture, but it might get them to think.

Carers with Attitude

Just back from a carers meeting where we 'discussed' the cuts. General feeling is a bit odd - they can't really believe all this is happening to their sons/daughters. There were odd sparks of anger, and a general feeling that we needed to do something to stop it. They want to speak to the managers and politicians directly but I think they're finding it hard to come to terms with the enormity of what these cuts mean for their own children.

When you go through the detailed cuts they say things like "... but they can't cut that, he won't be able to get to the doctors..." "... but that means he'll have to be with us all the time and I'm 73 ..." "... but she needs that to pay the rent, so how's she going to stay in her house ...". They're not really angry just yet - they don't really believe it. They (and me) can't believe how anyone could do this to a vulnerable, disabled person.

I know these cuts are real rationally, but when you're a carer, your horizons get pulled in and the circles you move in have lots of disabled people in them. They're your world, but outside, most people go to the pub or a football match or work, and there aren't lots of disabled people in their faces all the time. I mentioned Mobility Allowance to someone outside the 'disability world' recently and got the usual reaction - "most of them are scroungers who are just dodging work and cheating us out of our taxes - not your son of course - but most of them". Or another when the local cuts were mentioned "Well getting rid of a load of social workers has to be a good thing". But that isn't what these cuts are about. They're about locking up disabled people in their own homes and taking away the desperately needed care.

The real price of these cuts won't show until a few more carers commit suicide with their children and a few more learning disabled people are found starved in their homes because they didn't have the help to go out and buy food. Then the press will have a lot of 'Isn't this awful' headlines for a day before it goes back to covering the love cheat footballers.

This doesn't have to happen. We need to stop these cuts before they do any more damage. We carers need to get our heads out of the sand and start shouting. We need to stop being the silent, heroic martyrs the press and TV love to wheel out for a nice heartwarming end to the programme. We need to be Carers With Attitude.

A good nights sleep - or not

Just spoken to sons nurse about a review meeting date (internal update one, not the dreaded Social Services one.) Asked how he was - fine, well - asleep. He does a lot of this.

His sleep pattern is fairly well 'to cock' much of the time. Some of it is due to his epilepsy medication - it's a fine line between keeping down the number of fits he has and not sedating him so much that he hasn't a life. Some is due to boredom - if he's not interested in something he tends to 'switch off' - this can grade from just closing his eyes all the way to 'aggressive sleeping' where he's effectively comatose and unresponsive. His internal clock doesn't seem to work well either - he can sleep 48 hours or more, or be awake 48 hours with no apparent ill effects. All this tends to put him a bit out of sync with the rest of the world.

Result can be we take him to an event or he has a driver booked for the afternoon, and he sleeps right through it - we've given away a surprising number of tickets on this basis. At the other end, he'll happily stay awake all night and need 'entertaining' etc. when nothing has been planned for him. I suppose it's a bit like having an extreme version of teenager - itis. More practically, getting the right amount of feed and fluids in and ensuring his bowels stay reasonably regular can become problematic.

It can get tiring and frustrating, but it's part of who he is.

Bad times just around the corner

I don't normally bother with new year resolutions - I tend to get overtaken by events as sons health fluctuates, care crises intervene etc. etc. but I think this year is going to a bit predictable in some respects.

Afraid the main things on my mind this year are going to be surviving the cuts.

• Planning to manage without wheelchair transport when my son's Mobility Allowance is withdrawn,
• fending off NHS and Social Services review of his care aimed at reducing their costs (but not ours), already mutterings that neither want to pay for his physio,
  
• filling the gaps planned by our County Council who've just announced cuts to day services, respite care and transport for disabled as well as massive reductions to learning disability support (plus charging for what's left).

Bracing ourselves for these things is already taking its toll. The stress levels are up, the paranoia climbs and the distrust of any official communication peaks. these days I dread getting brown envelopes. The cuts are going to be bad enough, but we also have to live with the anticipation of them - it's not generally understood how debilitating this is.

I don't want these cuts, we aren't responsible for them (and with bankers still getting big bonuses we aren't all in this together).

My son can't speak, he needs oxygen, airway suction, pump feeding and a wheelchair but he's going to have to pay for this. And yes I do feel bitter.

One month before Heartbreak

The Broken of Britain website is doing a 'blogswarm' from 14th to 16th Jan. to draw attention to the cuts. I've never seen one of these before but if it raises awareness of what is happening to the disabled at the moment, I'll be taking part - not sure how yet. If you want to know more about 'One month before Heartbreak' the website is http://thebrokenofbritain.blogspot.com/2010/12/announcing-one-month-before-heartbreak.html - just scroll down a bit. Looks like one way it might be possible for people who can't do demonstrations - too ill, disabled or with caring responsibilities, can make their voices heard.

The name refers to the fact that the consultation on cutting DLA ends on Valentines Day.

An end and a middle

Christmas really is over now. Our daughter has gone back home - she managed to get up here for a full fortnight over Christmas, and we really appreciate her taking her precious annual holidays to see us. Our son is still in reasonable health despite the weather, though my wife has a chest infection - she doesn't allow herself to be ill so the antibiotics had better kick in fairly quickly or they'll have her to answer to.

Still quiet on the 'review' front - what's urgent for us obviously isn't for Health/Social Services. Not that I want the cuts we're frightened of and will have to battle against, it's just that the uncertainty is unsettling. I'm sure the people carrying out these reviews have very little conception of the impact of the sheer process, regardless of the outcomes, of these exercises. For them it's just work stops during the Christmas break - for us it's more worry and sleepless nights trying to second guess what they'll try to take away. I try to tell myself there's no point worrying until it happens but that's rational and this is emotional for us. At least if the conclusions came out we'd know what we were fighting.

Whatever the outcome, just insisting on a care review like this has a real, negative effect and I want that to be over.

How would you like your cut, sir?

Christmas is pretty much over. It's been a strange one. We didn't end up in hospital and there were no major traumas with care support. Our son even managed to open his presents on Christmas day - though he has been quite sleepy on and off since.

Back to what passes for normal here next week - we need to find out what progress his care review has made (if any) and respond to a number of 'consultations'. The most fun one is going to be from Social Services. They've asked us to comment (along with everyone else involved in adult social care) about how they should go about implementing the cuts. They start off saying there are going to be 25% cuts (whatever we say), so that's honest of them - nasty but honest. They don't mention the fact that the reason there are going to be cuts is that their own party nationally imposed a spending cap on them and they are enthusiastically implementing it locally.

The choices we're being consulted on are -

• increased charges on disabled people for essential care services (the fact that they have no money as benefits have been cut for the most disabled doesn't seem important)
• cut funding to care service providers (who will therefore be forced to do their dirty work by having to cut services)
• raising the criteria for being eligible for services (i.e. stop giving services to the less disabled)

It's like being asked to choose how we'd prefer to kill ourselves - hanging, electric chair or lethal injection. The cut I'd really like to make is to cut these cold hearted politicians out of government. We aren't all in this together - I don't see any politicians surviving on the breadline while having to live in pain and discomfort, not able to afford to leave their home and with the added problem of being labeled 'benefit scroungers' by people who have no idea what it's like. I do see bankers whingeing they'll have to move to the Bahamas if their Multi-million pound bonuses get reduced - because they're such valuable members of society - not.

The disabled didn't cause this crisis, they never got any bonuses. Being disabled isn't a bed of roses - but if you cut away all the roses, all you've left are the thorns.