When the personal isn’t political

I don’t often write about overtly political topics. I worry that I’m not sufficiently informed and haven’t done enough research to have an opinion that I want to make public. But in the current political climate, where it seems the people who really should know what they are doing don’t, I’m going to weigh in on something.

David Cameron’s memoir, For The Record, is about to be published and of course the main story is about Brexit. I definitely do not know enough to put pen to paper about that.

He has also written about his son Ivan in the book and an excerpt was serialised in the Sunday Times last weekend (behind a paywall here). My son is different to his, but they both have cerebral palsy and having a disabled child is something I do know about.

Cameron writes movingly about Ivan’s birth and the difficulty of managing his health needs. He describes the difficulty of your child being anaesthetised for operations, having a feeding tube inserted and becoming expert in managing tubes and syringes. All of this rings true to me, including the new normality of feeding your child via their tube on trains and planes.

This is the reality of many parents of disabled children and he and his wife, Samantha, clearly loved Ivan and like all of us did what they could to give their son what he needed. They learnt fast and stretched themselves. They didn’t anticipate being parents of a child like Ivan but got on with it with grace and determination. Ivan’s death in 2009 was a tragedy and I can’t imagine how sad they must have been. The grief must have changed them in ways I can’t possibly realise and will never go away.

The way he has described the reality of his experience means I find it really hard to read his account of Ivan’s life without wondering how he has avoided making the personal political. 

Cameron writes about how difficult they were finding it to cope when Ivan was young: ‘I found the phone number of Kensington and Chelsea council’s social workers, and soon, to my great relief, one of them was sitting in our kitchen, notepad in hand, talking about the help that was available.’ He describes how grateful they were for the help they received from children’s hospices. He recounts how he had visited a constituent, before Ivan was born in 2002, who had a severely disabled child and wanted his help with the lack of care her daughter was receiving and that he couldn’t have known that he would find himself with a similar child. 

It is rare for anyone to have sufficient power to effect real change but surely the Prime Minister is one of them. After coming to power in 2010 Cameron began a programme of austerity which saw the steady reduction of all services for disabled children. The government attempted to distance itself from the effects of its policies by claiming that it was up to local authorities to fund services, whilst reducing the money local authorities received so drastically that it was impossible for there not to be cuts. I am talking about services like social services, children’s hospices, physiotherapy, occupational therapy and specialist equipment amongst others. 

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My son was born in 2009. Our experience of parenting him has aligned almost exactly with the reality of austerity, and for us it has meant less of everything. All of the services we access have reduced. Our experience is not unique. 

My son, Ben, does not have epilepsy like Ivan, but he does have a feeding tube and is entirely dependent on us for all of his needs, night and day. I have never had a social worker come round and talk to me about the help that is available. My most recent experiences have been being unable to get hold of a social worker at all. We have been assessed and we are eligible for the following over a year: funding for two hours of help a week (at a rate that is less than market rates) and ten days of playscheme a year (9am-3pm). We used to get transport to and from the playscheme which is in another borough, but that has now been cut. We used to get occasional nights when Ben could stay at a children’s hospice but since the hospice receives no statutory funding and our local authority will not contribute, that has been removed.

The occupational therapy team that oversees equipment in our home is so overstretched that it is at least four months before someone can come and check the fit of Ben’s bathseat when it is uncomfortable for him. When we need new slings, so Ben can be safely hoisted from his wheelchair to his bed, our local physiotherapist tries to help order them on the NHS system, which is not her job, because otherwise he will spend months being hoisted in slings that are too small.

When Ben grows too big for his wheelchair we will wait up to three months for an appointment to get the wheelchair adjusted because there aren’t enough wheelchair therapists. When Ben needs a new walker, which everyone agrees is useful to help him bear weight and reduce the risk of hip surgery in future, we will need to fund it ourselves. Same with the positioning system he needs to sleep. There is not enough money for these vital aids.

The NHS and local authority therapy teams are full of talented, kind people working really hard in difficult circumstances with reduced budgets. Our local social services team cannot prioritise families like ours because they don’t have enough money to go round.

This is nothing to do with Cameron’s grief, which is personal and painful and not my business, but everything to do with his experience of looking after a disabled child. I find it hard to understand how he can recognise the importance of the care and support his son and his family received without acknowledging that those resources are no longer available. There are now children who don’t have specialist chairs to sit in at nursery because they are no longer funded, families that get no respite and need to fundraise for physiotherapy. Very few families are being proactively offered help from social services. For most people, the personal is political and few things alter your politics more than having a disabled child. Cameron appears to have separated the two things entirely.

Don’t feel sorry for me. We are privileged to have the resources to mostly get Ben what he needs and this isn’t about an individual. But please, feel really bloody angry on behalf of all the disabled children who were born after David Cameron’s son. Cameron was in a position of power and he ensured that all of the families with disabled children that came after his got less.

Making our own fun

It is the Easter holidays and like thousands of parents around the country, we are in the midst of filling the time with fun, Last week I thought we would try a cycling session at a velodrome.

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Wheels for Wellbeing run sessions at the Herne Hill Velodrome where they have a variety of adapted bikes and trikes for people to try, though we actually took our own wheels. The velodrome has a professional track with junior cyclists zooming round at high speed, and a flatter track in the centre where children and adults, with various disabilities or none, were cycling around on adapted bikes or trikes – some hand-powered, some with platforms for wheelchairs, some with two seats.

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There were very friendly, helpful people around. One of whom suggested we try some mittens to help Ben keep his hands on the handlebars. He went and found and gently fitted Ben’s hands into them, and they worked so well that I have since bought some. Then we bumped into a boy from Ben’s school, and Max, Ben and he did some races round the track. We were there for an hour and it was fun.

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I don’t want to paint too romantic a picture of this outing: because it is actually impossible to co-ordinate the feeding and sleeping routines of three children, Molly was hungry as soon as we arrived so I unpacked Ben’s trike to the sound of her bawling in the car. As the helpful man was fitting Ben’s hands into the mittens, I was breastfeeding Molly under my jumper while walking around and making sure Max wasn’t crashing into anyone. Elegant it was not.

It was raining for a lot of our visit, luckily not too heavily (not least because I’d accidentally left the car sunroof open) but I refused to let it put us off. If I have managed to get all of us to a velodrome with everything we require and no major meltdowns, we are NOT going home just because we’re getting a bit wet! Even if I have negligently put Max in a sleeveless coat.

When I mentioned the idea for this trip to James that morning as he headed off for work he said it was a brilliant idea but noted that it was also so ambitious that I might be nuts to attempt it. He’s right, it’s easier to stay at home where everything is familiar, but more fun to go out. Especially to new places, with welcoming people. And lovely for Ben to see a friend from school. A velodrome! Awesome!

I would love for Ben to do more things like this, where he could meet other local kids and make friends. Maybe even without us. But that appears to be near impossible.

A social worker phoned me in September last year and asked if she could come and visit us. I didn’t know what had brought us to to her attention, but she soon came round one day after school. Since she didn’t seem to need to interact with Ben, he stayed upstairs with a carer and I sat with the social worker in our kitchen for an hour while she asked questions and I answered them.

I had never met her before so I described our day-to-day lives. She agreed that Ben needs were complex. She said she could see our lives were difficult, with the tilted head and sympathetic voice that is so irritating. She asked how we were coping, but offered no practical help because I said we were doing okay.

When she asked what help we needed I said I would like some holiday activities, or weekend clubs, or any kind of extra-curricular activity for Ben that was with other kids and not initiated by us. We can find fun things for Ben to do and fill his days, but we can’t create a peer group for him to do it with, and this is what we need help with.

I said that, as far as I know, there are no holidays clubs in our borough for children like Ben and she agreed. I found one last summer in another borough and she said I should keep looking for things like this, and that when I found them I should contact her team in plenty of time and they would see if they could fund Ben’s place. Which was nice of her, because I definitely have lots of time to be tracking down holiday playschemes, liaising with local authority bureaucracies and checking they understand Ben’s condition.

I had heard of an adventure playground in a neighbouring borough that runs weekend activity sessions for kids like Ben, and asked the social worker if he could be referred to this. She agreed that it might be suitable, but warned me that there was a very long waiting list. That is not surprising, because multiple boroughs like ours don’t provide anything like this. Fine, I said. As far as I was concerned, this was obviously the start of the referral process. She had asked what I wanted, so I had told her. She was taking this forward. Right?

Six months later I hadn’t heard anything. Wow, this is taking a while, I thought. But when I called to check, the social worker denied any recollection of this discussion. She said I hadn’t asked for any referral and so she had not done it. She was more interested in telling me that I was wrong than in actually starting the referral. It turns out we need to be assessed, and the assessment needs to go to a panel, and if they approve funding Ben, only then can Ben be put on the very long waiting list for the playground.

I have since had conversations with other members of the team, and am still waiting for an assessment. So we haven’t even got to step one. Meanwhile, each of these conversations has made me feel really uncomfortable – the only way to get anyone to even think about starting this referral is to ask, repeatedly, for help, something I find hard to do. It seems like I am really putting social services out by asking for assistance and I appear not to have the language to make myself understood or to have a conversation without getting upset. I know we are not in dire need, and plenty of people are worse off, but why is it so difficult to access support which other boroughs (and most reasonable people) recognise is important?

I am asked exactly what I want, which I’m not certain of because I don’t know all or any of the options. The whole thing has to be framed in terms of us ‘needing respite’, because presumably trying to help a six year old boy make friends isn’t sufficiently urgent. We probably do need some respite, but even saying that makes me feel like I’m letting Ben down.

So we will carry on organising our own fun, and lots of fun there is to be had. We’ll go cycling again and try to find other welcoming activity groups. Luckily Ben has an enthusiastic brother, carers with energy and initiative, and an easygoing personality, but it would be really lovely, and a huge relief, if our borough showed some interest in helping disabled kids be children rather than ignoring them.