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.

Having a break – the guilt of ‘respite’

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For any parent of a disabled child, the subject of respite is a bit fraught. Often because accessing any is difficult, and will have involved tricky conversations/numerous phone calls with various professionals. Partly because the logistics of organising it and physically getting the child there with everything they require are onerous.

But mainly because it’s a double-edged sword. On the one hand we would really like a break. On the other hand we feel guilty for wanting a break. We are on the knife-edge of knowing that the respite place we have carefully considered is able to take care of our child, but also thinking that no-one is going to be able to take care of them properly.

Almost two years after we were first referred for respite provision, Ben has just had his first overnight stay without us. The somewhat casual timescale allowed us time to get used to the idea, due mainly to the first hospice refusing to feed Ben pureed food so us (and yes, I mean us, social services having still not managed to assess Ben) having to find a different place. We agreed to the new referral, then went for a visit, then spent a couple of hours going through aspects of Ben’s care plan, and then stayed there with him for a weekend, then the time came for him to stay there himself.

It’s a nice place. It’s run by nurses, so feels quite medical, but that means they are totally on top of medication and not at all intimidated by disability. It’s purpose-built building with lots of space, bedrooms opening on to gardens, a huge room for craft, fun and reading. Loads of books and friendly people floating around doing interesting things. There are other kids and their siblings, volunteers making bugs and Gruffalos.

To give some context, I am generally quite relaxed about being separated from my children. We are lucky enough to have lots of family in London who are willing to look after our kids. For the first three years or so of Ben’s life he spent one night a week with my mum, he’s spent loads of weekend with his other grandparents. Max has had ‘sleepovers’ of up to five days with grandparents and my sister and her partner. Molly is somewhat testing the model by being more dedicated to breastfeeding than I would ideally like, but at some point we’ll manage to offload her too. But of course, these people are all in our family. And as Ben has got longer and heavier, and the kit he needs has got larger, it’s got trickier for him to stay anywhere that isn’t our home.

We have therefore shifted the model so James and I (perhaps with a child or two) can go away, leaving Ben in our house with various permutations of carers and family. We realise how fortunate we are to be able to do this.

What the respite hospice offers is an opportunity for us to stay at home and for Ben to stay elsewhere, allowing us to be one child down (which with three of them is a welcome release of intensity), spend more time with the other two, and perhaps get some of the stuff done that we have been planning to do for months but never have time to (e.g. unpack boxes from our house move 2.5 months ago, or actually tidy up our tip of a house). I am keen on this idea.

Except that it also involves Ben staying somewhere else without us or any other family, which makes me feel guilty and nervous.

On the morning of Ben’s solo stay we packed up everything he needed (a full car of stuff) and James and a carer set off. I used Molly as a convenient excuse to not be the one to do the drop off. I called the hospice to say they were on the way, and it transpired that there had been some administrative confusion that meant they weren’t expecting Ben until that afternoon. The idea that Ben was about to arrive for his first stay without us, and they weren’t expecting him, that they weren’t all standing around anticipating the arrival of Ben, made me feel so sad and unsure. Should I call James and get them to turn back? The journey can take up to an hour so that would mean spending most of the day faffing around which would be the exact opposite of respite. As I burst into tears, the nurse said no, they would make it work.

When James got there it was actually okay, and Ben seemed alright, and by the time James and our carer left he was happily entertained and content. We spent the weekend with Max and Molly, and realised that looking after two kids is much easier that looking after three but still pretty relentless which was quite a helpful distraction. Max burst into tears on three separate occasions because Ben wasn’t there.

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Then we went out for supper to celebrate our 11th wedding anniversary, and appreciated that organising babysitting for two non-disabled kids is really straightforward. We ate delicious food, drank too many drinks, faded far too early, and came home to Molly screaming in the babysitters’ face. We had called the hospice and they said Ben was okay.

The following day we woke up to a house that only had our kids in it and us. Ben sleeps badly, and we’re lucky to have nightcarers who get up with him during the night and help us in the morning. We also have day carers almost every day which makes our family life possible. But the flipside of having a lot of help is that there is almost always someone in our house. It is a luxury to wake up and potter around in a dressing gown with only Weetabix for kids to think about.

We went for lunch, where we were just about able to have actual conversations with other adults, at tables with benches that wouldn’t accommodate wheelchairs easily. I had fun. But we were with family, and I felt bad that Ben wasn’t there. Even though we probably wouldn’t have gone for the lunch at all if Ben had been, partly because of the wheelchair, partly because trying to go for lunch with all three of our kids and actually expecting to talk to anyone is an absolutely ridiculous idea. We called again and Ben was apparently happy.

When James went to collect Ben that afternoon everything was okay. He seemed relaxed. There hadn’t been any disasters. When Ben got back home and saw me, Max and Molly he was totally thrilled. Max was so happy to have Ben back, equilibrium had been restored. Max was even content to not be able to watch his TV programmes because Ben doesn’t like them.

It was, by all measures, a success. Ben did fun stuff that he wouldn’t have done at home. Max and Molly got more of our attention, James and I had a bit of a break (it’s all relative).

So why do I feel so guilty about it? It reminds me a bit of Ben’s first week at nursery, when he was almost one. I dropped him off and called James on the way out in tears, saying I would never be able to go back to work because we couldn’t possibly leave Ben at nursery… Am I just further along the continuum of internal conflict that starts at angsting about whether kids should go to nursery or have a nanny (or any childcare at all), and ends at going away for a week with no kids? Or am I just trying to justify something that’s not fair on Ben?

I don’t think there’s a right answer, but for now I’m shattered and have a to-do list that stretches over two A4 pages and Ben was happy during this last stay, so we’ll crack on (as Max would say) and hope we’re doing the right thing.

Or at least not doing the wrong thing.