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.

Quiet, if not silent, night

Christmas is a time I've come to dread. Impossible to get enough nursing shifts covered, snow makes roads impassable (can't afford a 4x4 even if I approved of them) and sons health is usually fairly edgy due to severe asthma/low temperatures/flu etc.. We've spent too many Christmases in hospital to approach them with anything other than trepidation. This years problem looked like it would be compounded by service cuts, but it's turned out to be the threat of them rather than the reality - so far.

So, daughter is home till after New Year, she and my wife have gone to Midnight Mass, we've a nurse just come on to do the night shift (thank you, thank you), our son has settled in bed listening to a story tape (he's needed a fair bit of ventolin but seems to be quite settled for the moment) - I can hear the suction machine and the oxygen concentrator in the background but someone else is dealing with it just now. And I have a few minutes of Christmas Eve to myself. Daren't risk a beer, just in case I need to drive if anything goes wrong, but I've got myself a coffee and a mince pie. We take over again at 8a.m., so barring emergencies, we should get a reasonable nights sleep as well.

Just now the world feels OK. Happy Christmas to anyone reading this.

(S)no(w) place like home

Like everyone else up here, we're up to our eyes(well ankles at least) in snow. For most people this is a either a bit of fun or a substantial inconvenience. It's a little different for us. The logistics get interesting. Not all the nurses can get in for their shifts and our own house is only accessible by foot (had to leave the car at the main road a mile away.) Fortunately, our son was at his other address when the heavy stuff fell - it's rather more accessible than here - and the nurses have pulled the stops out by swapping shifts so they work a 'double shift', minimizing how much they have to travel to work. So far it's working OK - we're just hoping the roads clear enough for us to get him home in a day or so as he'll be without nurses then. It's not all bad - our daughter is home for Christmas and we have built a snowman - why should the kids have all the fun?

Despite all the toing and froing of late with his service provider, we have to accept that they've gone the extra mile in these conditions - literally, with one of the senior staff collecting nurses in their 4x4 for shifts when their own cars had been abandoned. Thank you. This could have been yet another trauma and stress inducer, but they've prevented that. Meanwhile, our son's having a chill out indoors with extra lie ins and DVDs. Christmas is usually a difficult time for us with chest infections, disrupted transport and missing nurse shifts.

Maybe this year will be better - don't want to speak too soon - we had to take him into hospital at 5a.m. Christmas morning a few years ago (fits/asthma/chest infection).

Merry Christmas - have a drink for us and enjoy.

Master of the (water) closet

One of the things many carers will be all too familiar with, but which is rarely talked about is - poo.

Following yesterdays debacle with my sons failed feed pump, we had to run his feed late into the night to get him sufficient hydration and nutrition. (His 'grumpiness' subsided quickly once we got a little feed into him - surprise, surprise.) Normally his bowels move a few hours after he's finished his feed for the day (I should probably have warned people of a squeamish disposition to leave this post early.), so it shouldn't have surprised us when he had an 'accident' just as he was about to leave for the day. It did surprise us, so the end result was a copious amount of heavily soiled clothing. My wife and the nurse cleaned him up and redressed him so he could go out, and I took up my natural role as 'poo master.'

This is a role I've taken on as the least skilled part of our care partnership. It's not particularly glamorous but it is necessary and I'm sure many other carers are at least as expert as myself. There are real skills in dealing efficiently with multiple, large items of clothing, slings, towels, wheelchairs, beds, carpet etc. and these go largely unrecognised by the outside world - and don't exist as far as Care Assessments, Person Centred Plans or Case Reviews are concerned. This post is intended as a celebration of all carers who regularly spend a happy hour or two up to our elbows in sticky, brown semi-solid waste. We are the unacknowledged experts at smell containment, soil removal, sluicing technique, pre wash solids reduction, drain unblocking and carpet retrieval. (not necessarily in that order.)

• We have the skills to transport heavily contaminated items from bedrooms to washing machines without leaving a trail a noseless bloodhound could follow. (Most of the time anyway.)
• We can transform a slimy wheelchair into a gleaming chariot with little more than a shower cubicle, a face (never used again for this purpose) flannel and a cupboard of cleaners, bleaches and disinfectants.
• We are the operatives who always get to the extractor fan first, who remove the items from the scene as they emerge, so that there's clean area to sort things out, who 'disappear' the offending evidence. (And don't drop it all that often.)
  

I know my wife appreciates this,(my son carries on blithely regardless), I hope other people who do this work are appreciated, though if you're a lone carer, I suspect there is no one to thank you - I at least, understand that this isn't a trivial exercise and just feel someone needs to express this now and again. (...and again ...and again.)

It's a dirty job, but someone has to do it - and I don't actually mind that it's me. This never fails to surprise me.

The wonders of poorly made technology

Meanwhile back in the real world, our son is reported to have been 'grumpy' all day - sideways looks, not happy (he can't speak - this is how he communicates). So we checked things over. His feed pump (he is fed directly into his stomach) has been telling the nurse he'd had his full amount. When we checked the bottle however, it was still full. He'd actually had no feed (and minimal fluids) all day. I think he had every right to be grumpy.

It's not meant to do this but the 'giving sets' are poorly made and packaged (this one had x2 severe 'kinks' in the tubing, blocking it off) and the pump is badly designed (it doesn't alarm if the blockage is in certain parts of the system). So it happily pumps nothing all day but shows everything is OK. the nurses should possibly have checked the feed itself (we did), but they shouldn't need to. This equipment is inadequate - we've reported it a number of times (yes, we have used the official yellow card system) but it's standard issue. The most insulting bit of all is that the call centre we reported it to seemed to think that sending us a free box of giving sets was an adequate response. This is not a substandard DVD, it's a piece of medical equipment. It shouldn't fail like this, it should alarm if it does fail and they should recognise that failing to provide fluids and nutrition for 24 hours is a serious problem.

We will of course report this to his dietician - again - but I'm not holding my breath. Last time the same thing happened, the result was precisely the same as the food delivery - nothing. A disturbingly large proportion of his medical equipment fails or is poorly made - wheelchairs, hoisting slings, urine sheaths etc. and it's got worse in recent years. I assume the NHS is buying cheaper products to save money. At least they won't be able to cut costs on these - they can't get much cheaper and nastier.

From meetings to checklists

Lots of meetings. Care package reviews (cutting rooms), Learning Disability(so called) Partnership Boards, MP's surgery (most sympathetic so far - but out of government - confirms that Mobility Allowance cut is now law), etc. etc. Meanwhile the 'review assessment' plods on (honest it's not about cuts, we're just assessing his needs - it's just a coincidence that Social Services have just announced 26% cuts to adult care). Lots of health and Social Work time devoted to assessment and 'observation', none to actual social work or his care.

I'm getting beyond cynical about these cuts - I know it is affecting everyone but the sheer amount of effort going into it makes it feel like persecution. Anyone would think we were bankers the way we're made to feel guilty for needing care/support.

On top of this, his main care provider seems to be retreating into a 'doing everything by the book' bunker. Person centered is giving way to standardisation on all fronts - how he gets his spending money dispensed, how his emergency medicines are organised, etc.. And none of this is for his benefit - it's all so that they can prove they do it the same way for everyone, whether it works for him or not. I can only think they are terrified of CQC or the commissioning authority finding something that doesn't fit their checklist.

This isn't progress - it's degeneration. Paperwork has become more critical than care, checklists have replaced humanity. Being seen to do things is more important than doing them and it's for the benefit of the 'care police' not the person with a disability any more.

This rant will almost certainly continue - things don't look like getting better any time soon.

Oxygen and paperwork

In spite of all the cuts and hassles surrounding his care package, our son carries on regardless. He's actually quite well in himself despite the cold weather - it usually precipitates his asthma and develops into a chest infection. He has been on antibiotics until yesterday, so we'll need to keep a close eye on his chest over the next few days to make sure it doesn't deteriorate. My gut feeling is that the PEP mask (Positive End Pressure) used x3 times a day, coupled with a low level of oxygen most nights has helped immensely. Last winter was a nightmare - continuous chest infections, one side consolidation, hospital admission at 5 a.m. Christmas Day, etc. etc..

The difference his chest makes is enormous for his quality of life. He's more alert, has fewer fits and generally seems more comfortable. I know this could all change very quickly, but having him sitting on the sofa with us and looking round listening to his sister on the phone is great.

Meanwhile, social services are 'observing' his day service over the next few days - as this review is purely prompted by the cost of his service, I think I can be forgiven for not quite believing the lady when she says she isn't trying to cut his service service, just 'assess his needs'. She probably means it, but I don't have the same assurance from the people she reports to. At least she will have seen him, her superiors, who will actually make the decisions, will only see the paperwork.

Real Life

On a happier note, his health is OK just now despite the snow and freezing temperatures. His chest/asthma is holding up reasonably - we usually get a dip in these conditions. Unfortunately his activities have been somewhat curtailed this week - too cold for swimming, no one else (even tutor) turned up for wheelchair keep fit and the hoist at the sports centre has been broken for three weeks now, so no trampoline physio either.

We tried to make up for this by taking him places ourselves. He slept right through a visit to see his grandparents (what his sister calls 'aggressive sleeping' - i.e. unrousable but with muscle tone.), but really enjoyed 'Unstoppable' at the cinema. He likes noisy, action films even though he's officially registered blind - he has some limited peripheral vision and is developing cataracts but sees enough to get the visual stimulation as long as he's at the front. It does mean that whoever is with him tends to leave with a stiff neck and a headache, but it's worth it as he visibly reacts and obviously enjoys the experience.

It's good to get away from the cuts once in a while.

Immobility Allowance

We went to see our MP about the governments Spending Review withdrawal of Mobility Allowance from people in registered care - our son and lots of others, particularly those with complex care needs and learning disabilities. He was very sympathetic and personally disagreed with it, but as he's in opposition now, can't do much about it. Apparently it is now law and will come into force on the due date when everyone has forgotten about it. We've had quite a few people saying to us that it was just a proposal and they'd never go through with it. They have. The term in the Spending Review was 'equalised' - 'equalised' to zero.

I'll put up chapter and verse, and which MPs voted it through once I've got the details, but basically it's all the Conservatives supported by the bulk of the Lib Dems - though I suspect many of them aren't fully aware of what they've done.

So we'll have to budget for £50 a week off my sons already meagre benefits - he gets very little e.g. no Income Support as he's classed as in a nursing home most of the time. He can't actually have a real life without his adapted van, so we'll have to find a way to pay for it out of our pension. We're certainly 'in it' but it doesn't feel like 'We're all in it together'.