Will David Cameron remember his promises to Carers?



I had a phone call at 11pm last night from a journalist asking if I would be prepared to comment on a radio breakfast show about the current story in the media involving the mother of a child with complex needs.  This mother had met with David Cameron before the election where he had promised to support carers, she is now at her wits end trying to care for her disabled child (she is also a mother of four) with minimal respite and had posted on Mumsnet that she was considering putting her child into care.  The journalist wanted to know what drives a mother to this point......

At the time of the call I was having a "bad Daisy night" (we class this as one where we have to give maximum doses of all her pain drugs over the night) - she was screaming in pain from her dysfunctional colon, writhing in agony and I was in no state to give any sort of sane comment to the press, however there is so much I want to say that I thought I would blog it...

Much as you can try, you will never know what it is like to parent a child like Daisy.  Andy and I are fairly stoic, old fashioned in some ways, in that we try and get on with things. It has always been difficult for us to accept and ask for help.  We keep smiling and gritting our teeth and muddle through, changing plans, juggling childcare, dealing with situations, to see us day to day you would not know what we have to do just to be up and out and dealing with the world....

Every single night is broken, sleep does not bring rest anymore, a good night is one where Daisy only wakes about twice, a bad night is one where we are watching the clock waiting until we can draw up the next syringe of ketamine or paracetomol so that we don't overdose her.  Sometimes her stoma bag comes off or the night bag which attaches to the stoma bag at night detaches - can you imagine dragging yourself out of bed to clear up nearly half a litre of ileostomy fluid (liquid poo) from a child who has just managed to fall asleep, then change her bedding and settle her down?  Sometimes she is itching , we don't know why, and itches to the point that she pulls her hickman line dressing off and we need to re-dress it - using sterile techniques, not easy when your eyes are half closed with sleep....

So we get through the night and Andy has to go to work and appear professional and together.  I have to deal with our other three children who all need their mother, either to hunt down a missing oyster card at quarter to seven in the morning, find a missing piece of school uniform, deal with a homework ticket which they did not tell me about the night before and make sure they eat breakfast.. By this time Daisy, who was probably screaming and banging her head against the side of her cot in pain the night before is now all smiles and happy, I have to clean her TPN trolley and prepare everything for disconnection, draw up her meds for the day, disconnect her night bag and empty it and wash it out as I am not allowed to have a new night bag for every day for budget reasons...

I make up her milk to the recipe the dietitian has given, nothing is standard with Daisy so I can't get the pre-made bottles of milk other chidlren get.  I curse myself each morning that I didn't make up the milk the night before....I run the milk through her enteral milk pump and give her the morning meds and while the TPN is winding down I throw myself in the shower while shouting to Jules to make sure he has his school bag ready.

I draw up the line locks we use to prevent hickman line infections and then I disconnect her TPN and lock the line.  I dress Daisy in her school uniform, she can't do this for herself, put her leg splints on or if I am feeling lazy just her special boots with the retaining straps....she should wear the splints in order to delay the need for more leg surgery but they hurt her and sometimes there is just not enough time to get them on her.  All the time I am looking out of the window praying the school bus won't be early so that I can do battle with her hair.  It may seem a facile thing to worry about Daisy's hair with all the other things going on, one of the way Daisy's gene mutation and early failure to thrive have affected her is that she has very sparse, coarse, brittle hair, it knots easily and if it is not brushed and oiled daily forms into dreadlocks.  So this is the part of the morning where I am not being a nurse, I am being a mum, brushing her hair, putting ribbons into it, anything to make it look tidy so that she is like any other 6 year old school girl, and also avoiding the need for me to cut great matted chunks out of it...

At 8am I emerge from Daisy's room and carry her downstairs.  We have to lift and carry Daisy up and down the stairs all the time, always with one of her pumps connected.  We have been doing battle with Social Services Occupational Therapy for the past 18 months to get a solution to how to get Daisy up and down stairs, at least we have moved on from the early days of our battle when they sent a man around to fix a bannister to the wall having never even met or assessed our child, needless to say he was sent packing.  Today we were told we will hopefully get a stairlift to move her up and downstairs, however we will have to wait a while until new budgets are agreed later this year.  I just hope that my back holds out between now and then and that I don't fall downstairs while carrying her......

I put Daisy into her special needs buggy, scribble an update in her home school diary (should have done that the night before too) and then help wheel her onto the school bus.  I slurp down a cup of tea (often made but one of my children, they are well trained!) and then Jules and I leave for school.

Very rarely (infact I can only remember 2 occasions) I have gone back to bed for a sleep after the school run, there is always so much to do once the children have gone to school, starting normally with restoring Daisy's room back to a fit state to connect TPN later in the day.  The new bag of TPN has to come out of the fridge and the bedding needs to be washed, some days there will be three loads of Daisy's bedding to wash - and I make the bed up in several layers so that I can peel layers off at night to save time!

Every Monday we get a delivery of TPN and ancilliaries, I need to order stoma supplies, enteral feeds and supplies get delivered, repeat prescriptions of meds, .  I wish our PCT would just deliver full boxes of enteral syringes to us like friends who live in other areas.  Instead we have to contact the homecare nurses when we need new syringes and they will leave a bag in the reception of outpatients if they are not passing our way in the next few days.  I am then expected to reuse these syringes several times in order to save money, so more washing out and sterilising to add to my daily list....

The appointments are endless....eye hospital, audiology, orthopaedics, speech and language, local consultant, gastro consultant, cardiology, TPN consultant, ultrasounds, ecgs......  Thank goodness she is now in school and the physio can go and see her.  The phone calls never end and the paper work is out of hand...forms for everything.  Every year we have to reapply for school transport even though her needs will never change.  The Disability Living Allowance form is probably the most soul destroying thing I have to do, and up until last year I was having to fill it in annually even though Daisy's condition will never ever get better....It takes days to fill in the form and it is a depression inducing exeercise to describe on page after page the worst and most negative aspects of your child's life when all you want to do is be positive.  But you can never be positive when filling in a DLA form, one positive sentence in error, one hopeful comment and you could have your allowance stopped while they investigate.  Like my poor friend whose daughter spends her night on oxygen and is regularly in and of hospital, on a really good day she may be able to manage the walk to school (but not back again), this was interpreted as "can walk to school" and her DLA was stopped, including her entitlement to a mobility vehicle while it was investigated, needless to say at appeal it was reinstated and back dated, but at what cost to the poor family who struggled in the interim.

Some days I just don't want to face all the admin and rubbish at home so I go out for a long walk or meet with friends and just for a few hours I become the person I should be.  I'm not Daisy's mum or parent of disabled child trying to negotiate the system, I'm me, trying to have a life.... We have to have such broad shoulders becuase inevitably while our partners are at work we are the ones dealing with the officials and bureaucracy to make sure that our child gets the childhood they deserve.  We are not trying to ask for more than we should, just a chance of a level playing field for our children and they need so much more than a typical child.  And for me? I've stopped dreaming of going back to work, it's just no longer possible but how nice would it be to go somewhere where I wasn't Daisy's mum and having to use medical speak all the time... I would like an indoor wheelchair for Daisy so that she can participate in family life, so that her siblings don't have to lift her and so that she is not confined to her bed once her TPN is on, the problem is these chairs cost around £2,000 (nothing is cheap when it has the label special needs) and no-one can agree whose budget this should come out of, so while the grown ups are arguing we are left struggling or resorting to using the outside wheelchair inside the home..

I am very lucky in that Daisy has a fantastic key worker who has known us since she first came out of the neonatal unit.  She has been our advocate and ally over the years and has fought to get Daisy a package of support, this has taken a long long time and now I'm informed that we have the biggest support package in the borough, and this is what it is - 2 funded nights a month at our hospice ( it went up to 2 nights in November and is only until the end of March when it will go to panel) and direct payments to enable us to buy in care.  Bearing in mind we live in the most expensive city in the UK this money does not stretch as far as it would in other areas.  However I am able to pay for an after school nanny (plus her tax & insurance) to come to the house from 3pm until 6pm, about twice a month a very good nurse friend comes to the house to babysit so that we can either take the other children out to do things we can't do with Daisy like go to the cinema, or go out ourselves.  We are lucky, it is a very good package, but actually it's not respite, when the nanny comes to the house her job is to do the job I can't do because within 30 minutes of Daisy arriving home I have to put her TPN on, so she is talking to the children about their day or cooking their dinner while I am upstairs getting Daisy ready for the evening.  She spends around 16hours a day connected to the TPN pump (when she is not on this she is on her enteral pump) so then she is limited to being in her buggy or cot. It is great to have another pair of hands to help even though she cannot do anything medical for Daisy but as Andy is in work and I have no family within 300 miles it is the next best thing.

Evenings are spent running up and downstairs to Daisy, adminstering meds and hoping she will sleep, which of course really doesn't happen...both Andy and I have fallen into a habit of staying up late, mainly because there is no way we can actually have an early night.  We live for the nights when Daisy can go to the hospice, it is the only proper respite, I love my daughter desparately and will do anything for her but the only way I can get a break and recharge my batteries is when she is not in the house.  We are so lucky to have Chase and to have such a long relationship with them, Daisy has been going there since she was only a few months old so it very much is like a second home.  We had to fight and fight for social services to pay for funded, guaranteed nights at Chase Hospice.  We had to prove there was no-where and no-one else who could manage her care and needs, Daisy has had her condition all of her life but it took until she was 6 years old for us to get 2 funded nights a month where we get time off from looking after Daisy. And this is where I can understand the mother who was considering putting her child into care, I doubt highly that she would have acutally done it but she probably woke up one day after night after sleepless night and thought, I've had enough of being trodden all over by faceless nameless people in committees and teams and panels who are playing God with me and my child's future.  If social services were to look after Daisy full time it would cost them thousands and thousands more pounds than they currently pay to have me stay at home to look after her.  However I am never party to any of the conversations or reviews or discussions, I never have the chance to present my child's case or represent her needs, I have to rely on others to do this.

My sense is that things are getting harder for us parents of disabled children, budgets are being stretched, care packages are being scrutinised, time delays are increasing all in the name of spending reviews and cost savings and all while our children are being denied the childhood they deserve.  I had hoped that our Prime Minister would understand, he has walked in our shoes, he said so during his election campaign, he specifically singled out the cause of unpaid carers during one of his TV debates....I guess we can just live in hope that he will remember his promises.
Sorry if you thought I had disappeared for a while - it really is so difficult to find the time to sit down and put my thoughts down, I find myself relying on quick facebook updates to stave off the inevitable texts which arrive when I have not been in touch for a while...so, where were we - December....

Daisy has continued to have problems with her repaired hickman line, sometimes itching so much she pulls the dressing off, this is not a good thing.  A couple of times it has looked very red and infected but cultures have been coming back normal, and bloods are OK apart from Daisy's ongoing problem with chronic anaemia, despite nightly intravenous iron. The hickman line is Daisy's lifeline, without this access she cannot get TPN and would not be able to live so I am worried that things are not right with it - you get to know your child's line after a while and this one does not feel right....Daisy is having a Lineogram at GOS next week to see if there is a tiny tear under the skin which is causing the irritation.  It's a difficult one, I hate have having to depend on a line which already has a repair but at the same time a new line would further limit her line access options as we cannot use previously used sites of which there are many, and as we all know Daisy is not good with anaesthetic and line insertions (an interventional radiologist told me once that her veins are very wiggly, imagine that, all those years of medical training for a diagnosis of wiggly veins).

Line worries aside the main thing we continue to be concerned about is Daisy's pain, we had to up her pain medication over Christmas and use buccal ketamine about 5 nights out of seven. We all live with Daisy's pain on a daily basis - in fact during the day she only occassionally experiences pain, night time is another matter and she becomes a different child to the one everyone knows.  Our other children rarely have friends over for sleepovers and we only ever invite "understanding" friends and family over to stay because often the household is woken up by her screaming.  We continue to wait on a date from GOS for a manomentry and other tests to see if the high output from Daisy's small bowel can be managed, I have my doubts....when we do eventually go back in , Andy and I will ask for a second opionion referral to Birmingham Children's Hospital where they have made a lot of progress with children with intestinal failure. We have been told that transplant is not an option, for various reasons, from the risks posed by her Costello Syndrome to the concerns that the pain may remain despite a new gut, but for Daisy's sake we have to leave no stone unturned.  In the remote possibility that Birmingham thinks that transplant may help, Andy and I are not sure that we would even put Daisy through that, but we need to at least have explored all options even if it does confirm once and for all that the only option is life on TPN.

Another option we do want to explore is the possibility of removing Daisy's colon entirely.  The biopsies have shown that it will never work properly and is the likely culprit of the pain she experiences, even though it is defunctioned it still gives her grief with daily mucous and bloody discharge from her bottom - again the worry is, what if this does not help, it's a big surgery to put her through but hopefully one with less long term risks.  Of course all of these conversations depend on us getting back into GOS for our inpatient stay or at least moving Daisy's outpatient appointment forward.  However over the years I have learned not to burn any bridges and to be patient,  Daisy's gastro consultant is the best in his field and he has always done the right thing for Daisy so I will try and be patient while we wait for the call....

Of course since my last post we have celebrated Daisy's 6th Birthday, Christmas and New Year - all of which have been significant dates in life with Daisy to date - this year was probably the best yet - no hospital, she was well and there was even snow!  Daisy loved the snow, especially sledging on the common opposite our house with her big brothers and sister, however it did put paid to our plans to have a proper birthday party for her as everyone was snowed in.  In the end we had an impromtu party with local friends and Daisy's wonderful carer managed to get to the house (probably because she is swedish and not phased by a bit of snow) and did a magic show for the children.

Daisy loved Christmas, especially all her Singing Hands dvds and her ELC Happyland Village.  Daisy knows Singing Hands from many months spent in GOS and now appears in one of their DVDs, we bumped into them while visiting Chase just before Christmas and Daisy was beside herself with excitement.  Singing Hands are probably the main way Andy and I have learned Makaton, Daisy's signing system so we were pleased they have produced a Christmas DVD so we can sign along to I'm dreaming of a White Christmas,....

The start of this year feels more optimistic than previous years - in a way it shouldn't, Daisy's gastro problems are the worst they have ever been, her TPN requirements keep going up and her stoma output remains at an average of a litre, her pain meds are being increased regularly, but cognitively she is coming on in leaps and bounds, she vocalises more and more, shouting for her brothers to come and put DVDs on, or demanding help with games, she is growing up in so many ways and shows us daily how capable she is.  In many ways we now know what is happening with her gut, TPN is forever and the stoma is permanent, we can live with that now.  Tomorrow the palliative consultant is coming to visit to adjust the pain meds and add a new one in, hopefully we will get some answers from the gastro consultant soon about colectomy surgery and second opinion referrals, so more than ever before there is a plan and we know what is happening.

My daily battles still continue trying to get support, equipment and respite help - it is these things that wear you down,  I know what Daisy and the family needs but sometimes we have to jump through so many hoops to get to that point, and I also think that living where we do doesn't help, there is a postcode lottery element to support for children with disabilities.  And beyond these battles we have more mundane issues like the leaking sewer pipes underneath our kitchen floor....at the moment we have no kitchen, all of Christmas was spent with us burning scented candles to hide the smell, hopefully the work will be finished by the end of January and we will have a shiny new kitchen and floor and no more broken sewer pipes...hopefully my sanity will be intact as I fill kettles in the bathroom and washup in the bath....Daisy is oblivious to the chaos of our lives, school is the most important thing in her life, followed by Singing Hands and then her siblings who are at her constant beck and call....she is surounded by love and happiness and that is why, whatever it brings, 2011 will be good for us...

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