Friday night I thought my daughter would die. I could see her struggling to get enough air, her little chest fighting its smallness. Doctors and nurses hurrying around her, when all I could do was gently pat her little fist that was tightly holding onto my finger. Her bed being rushed through hospital to get to intensive care unit, where the team was waiting to hook her up on bigger and better machines.
I’ve been here before and undoubtedly I’ll be here again. Now as Freya peacefully sleeps at the paediatric intensive care I can feel grateful that we are given more time with her.
I read an article last week that explained that having a child with a life limiting condition was like being in a field with your child knowing one day they’ll step onto a landmine and there’s nothing you can do about it. I remember thinking that I was not quite there yet, in my mind my precious Freya has always a chance that she’ll beat the odds, however much the cards are stacked against her. And then days like this happen, when I know how slim the hope that she does not stumble and fall really is.
I’ve written about the difficulties we have faced with various professionals – the fights we have with housing, with making sure Freya gets the care she needs. This week has been particularly challenging. As for someone who fights for living I know that opponents who are illogical and refusing to engage in a reasonable matter can be challenging to deal with. Yes, I know I am right. And I know that if I pursue them through the avenues of complaints, ombudsmen and courts they will have to pay. But it’s a shame someone in our position has to push so hard to get what we are entitled to.
I’ve written about Haringey Housing before and their culture of inefficiency to stop people successfully applying for housing. I had my suspicions, but could have not been prepared for the amount of lies, pandering and disinformation I have been given in the past weeks.
Let me recap: Back in February we had a Haringey OT visiting our flat. She assessed it and told me outright she could not recommend any adaptations to our flat – we simply would have to be rehoused. Taking Freya out through the steep dark staircase was danger to not only Freya but for the two people having to do it. She wrote her report, Haringey sent us a form. We filled and were told we would get a reply.
After weeks of chasing and sitting on my phone trying to get through I had had enough. I decided to email Haringey’s head of housing demand, Denise Gandy, directly. To be fair to her she did get one of her team to reply the same day. It just was the reply that was unpalatable.
Haringey’s “independent medical advisor” had assessed Freya’s medical needs as moderate and that we should be placed on band C on the register. Without seeing Freya. Or her medical records. Or speaking to anyone in her medical team. Or visiting the flat. Or, by sounds of it, actually even going to medical school, as I have been repeatedly asking Haringey what are the credentials of this man, only to have my questions unanswered.
What he did have was the OT’s report, with a covering email “please rehouse this family as a priority as they are in a desperate situation”. The report explained, for example, how Freya was missing out on her medical appointments as I could not take her out by myself.
After my email Haringey then carried out a hurried review on Friday afternoon and upgraded us to band B. Whereas band C means “no chance in hell” band B has an average waiting time of 7 years. When I said I still did not agree and asked for details of their appeals procedure I was basically told I could either suck it up or take them to Court (a statement later retracted when I told them they were denying me of due process).
So here we are. I have been speaking to pretty much everybody with ears about this. I have received some great support, but I have also received some surprising comments from various professionals. “The housing list is really long. You might just want to go home and think about challenging Haringey when you are settled in”. “Housing is a very long process and you might want to think about Freya’s quality of life being better at home than stuck in hospital, particularly if you have limited time with her”. It seems it would just be so much easier for quite a few professionals if we just shut up and went home, hoping that Freya only decides to need resuscitation when we are both home.
Well that is just not good enough. I’m sorry if us trying to keep our daughter alive increases your legitimate workload. When Freya was born we promised her we would give her the best fighting chance. And we promised we would give her the best childhood experience we could, however long it lasts. In our current home neither is possible. For us to take Freya out we need to walk down a corridor, down a steep, narrow, dark staircase to a small landing. We then need to open a double locked door (one with a key), move Freya’s pram, walk down another corridor and open another double locked door. No one who has visited our home has even attempted to tell me how we could ever safely carry Freya, an oxygen cylinder, a saturation machine, a ventilator, a feeding pump, bunch of suction catheters and emergency bag downstairs in one go as Freya cannot be left unattended. In fact the OT thought the stairs would not be safe even for two people to take Freya out.
What really scares is us, and keeps me awake at night, is thinking what would happen if there was an emergency and only one of us was at home. Making the decision whether to continue to resuscitate your dying child or spend precious minutes letting in the ambulance crew is one NO parent should have to make. Medical emergencies are a sad reality of life for us, but maximising Freya’s chances of survival during these can be done fairly simply – by providing us with a property with an easier access for emergency crews.
I know there is pressure for social housing. But who does this system exist for if not for someone like Freya? She needs a home where we can easily call help and to take her out to do normal baby things she so deserves and needs to do. It hurts the depths of our hearts that we are in this position: Would we rather have a healthy baby, work and pay London rents? Yes, million times over. Do we think we should be given social housing just because my baby is sick? No. We need rehousing because where we are is not safe. It seems that we are punished for daring to have a family, to work hard enough to be too rich to be in the benefits system, too poor to be able buy ourselves a suitable home.
Want to help us? And then if you agree with me can you tweet @homes4haringey @haringeycouncil telling them you are worried about how they deal with disabled children. Link them this post if you wish. Help us by asking for #SafeHome4Freya. Don’t have twitter? Why don’t you drop a line to them at mailto:firstname.lastname@example.org telling them that you are worried about them failing disabled and chronically ill children’s housing needs and putting their lives in danger by failing to properly to deal with their housing applications. Share this with your friends – ask them to act. More pressure we put on them sooner we can take Freya home!