Housing and sick kids (and what makes me very angry)

I have been meaning to post for a while but little miss Freya has been keeping me busy darting between the PICU and the ward… and most recently just by being a very happy and active baby requiring a lot of play time on the floor.

The topic I have wanted to write about is one of those that really makes my blood boil. It has been quite hard to really convey my thoughts and not just swear and SHOUT for pages and pages on end.

This topic is housing – one of the hot potatoes in the British politics. If you follow British news media at all you would have seen endless stories about the housing crisis. One group affected but not often talked about is kids with serious health issues – there are many chronically ill children with life limiting conditions stuck at hospitals just waiting for their family to be moved to a home suitable for their needs.

Here’s our story.

For those of you who are not well acquainted with London property market here is a short (completely subjective) summary. Everything is very expensive. The Brits are not good at building or at architecture.  So houses are crammed, moist and cold. Most likely you have a mouse or twelve. If you are lucky you can pick up a rundown four bed house in my neighbourhood for about half a million quid. And we live in the ghetto.

Before Freya was born I wanted to buy a flat. I saw many. Quarter of million quid for a two bed with a hole in the bathroom ceiling would have been ok had there not been rat traps in the kitchen.  Slightly cheaper third floor council flat was spacious but it looked like crack addicts had had a party in the communal hallways the night before. In the end I thought I’d just park my plans of becoming a property owner, take half year maternity leave, go back to my generously remunerated job and buy something then. In the meantime we were to stay in our cheap but cheerful privately rented first floor flat.

And then Freya came. It was soon clear that I would have to revise plan A. Also, it became clear that our cheap and cheerful love nest was not suitable for a kiddo who comes with as many accessories as Freya does; Oxygen cylinders, suction machine, loads of suction catheters, feeding pump, saturations monitor, an emergency bag including delightful items like a variety of tracheostomy tubes in case you get to do an emergency change and an ambubag to help you to revive your kid if they decide that today is not a great day for breathing. In short, getting her highness out of the flat is a two man job – and something that most parents take for granted like popping to the shops with your kid alone is an impossible task.

So I thought I would ask us to be rehoused. This is the kind of situation I expected to be the highest priority for social housing – a family with a child with a life threatening condition needing a suitable home with easy access – not only for going out, but also for ambulance crews if and when they are called over for emergencies. I was mistaken. I found there was no help at hand.

One of the things I found particularly hard was how we really didn’t seem to be anyone’s priority – whereas half of the time we were being told by various medical professionals that our beautiful daughter was going to die rest of the time we were told that it was not a priority to find us a suitable home. Instead, I was repeatedly being told helpful things like that it would be “easier” if I would just go and pay for a privately rented suitable flat myself. And being told by Haringey Disabled Children’s team repeatedly that there was nothing they could do until I found it was their responsibility to do the referral for the assessment (and by doing so getting the ball rolling for the whole process). 

 It took me six months just to get the flat assessed. In the end I had a full blown rant at a social worker during which I told her that I was going to contact the media and Haringey social services had two options – either to come across as a service who has had their budget cut mercilessly, but who still try to do best in a compassionate and responsible manner…or as an obstructive, negligent bunch of incompetent idiots who are keener to safeguard their budget than ensuring disabled and/or chronically ill children in the community have their basic needs met.

It worked. Two days later the Haringey community OT called me up for an urgent review of the flat. She concluded there was nothing else she could recommend than rehousing.

One may think this would then lead to a prompt rehousing. Nope. We are not even on the list yet. We live in a bureaucratic nightmare of filling in endless forms all send to us in sequence as opposed to having them all together completed and assessed in one go (which one would think would be easier for the “consumer” and the service provider, but then that does not seem to be the point). As far as I can see the whole system is designed to be an obstacle course: More people fall at hurdles less people make it to the housing list, less people the government will need to house.

I can see the twisted logic in this – at the end of the day more people who get fed up and house themselves the better for the government and more money saved. But approaching this even purely from money perspective it cannot make sense having chronically ill albeit clinically stable kids stuck at hospital for no other reason than housing – for example, one of Freya’s little tracheostomy ventilator dependent friend is stuck at the hospital and ready to be discharged since October 2015 just because his family needs to be rehoused.  With a price tag of nearly £1,000 a night for the tax payer it would have been cheaper to buy this family a house – even with London property prices being sky high.  

But it’s not even the incredible waste of money and NHS resources that really makes me angry. It’s the cost to families like ours. Leaving your kid behind in a hospital every night is hard. But when the reality is that there is a big chance that your kid will never reach adulthood it’s heart breaking. The housing crisis and this government’s catastrophic housing policy are keeping kids with life threatening and limiting conditions unnecessarily in hospitals when they don’t need to be there. Families like ours living for months in crazy limbo that hospital life is.  Precious days, weeks, months that could be spent together at home forever lost. And that my friends makes me angry.   

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