Our story:Continuing care at home


How a society takes care of its weakest is, as far as I am concerned, the right measure of how successful it is.  Today in the UK thousands of families with disabled and/or chronically ill children are failed by the government and left to fend for themselves in the most difficult of circumstances.

Let me tell you our story.

When Freya was two weeks old she was sent to the top children’s hospital in the UK. She had number of investigations and was seen by several different teams. When she was three weeks old we were given the devastating news that the experts did not think her chest was big enough to support breathing in long term. In short, they thought Freya was unlikely to survive her childhood. Perhaps the most positive thing they could tell us what that CCMS is rare (less than 100 documented worldwide cases) and that they had not seen many cases like this. This meant that it was really difficult for them to predict her future or how she would fare in long term.

We were devastated. But we immediately we knew two things. We wanted to give her the best fighting chance. And that we wanted to take her home.

My recollections of those days are hazy. I remember a number of professionals coming and going. Sympathetic smiles. Questionnaires being filled. Oxygen and feeding pumps being ordered and delivered. There was a lots of home equipment and lots of phone calls from various suppliers.  Whether we would need help at home was discussed. After all, Freya was on oxygen 24/7 and fed slowly through a nasogastric tube. And she was a snotty baby. We were given these big yellow monstrosities of suction machines to help to clear her nose so she would be able to breath. Forms were filled and there was some sort of closed doors opaque procedure whereby “a commissioner” would decide if we would get any help. The lady sorting out the paperwork was on holiday. For a month. The community service for children with life threatening or life limiting conditions provided a specialist nursery nurse to come to look after Freya for three and a half hours a week. There was talk of disabled children’s team at Haringey social services being involved but no one from there bothered contacting us. Meetings were held were professionals were smiling at me, saying things like “you are not alone” and that “we don’t you just to survive but to enjoy yourself”.

So we went home.  My mum and dad came to help. I always thought that after crazy years of constant business travel I was good at sleep deprivation. Nope. I have never been as tired as I was during that first week. We slept in shifts as someone always had to stay up with her. Either her oxygen saturations would slowly start dropping or there it was a feed time and you had to stay awake making sure her ng tube would not become dislodged causing you to accidentally feed her in the lungs. Or there was an explosion of snot and vomit her trying to desperately try to clear her tiny little airways. And where was the help? Where were the professionals? Available from 9 to 5. Even then most of the time I found them willing to offer a sympathetic ear, but as for practical help there was none available.

Eight days later Freya’s oxygen levels dropped. We took her in to the local hospital and she got admitted with bronchiolitis. A couple weeks later she was well enough to go home. But I refused to discharge her. I told them there was no way I would discharge her until a care package would be sorted. I managed to track down social services “who had tried to contact us repeatedly”, although neither one of us had received any phone calls, emails, letters or any other sorts of communications from them.  I cried. I pleaded. I argued. I was told I should ask my GP to refer me to therapy, or if I felt I was not coping well I should go to the A&E. I was made feel I was asking for the sun and the moon.

It’s not easy to fight when everyone is making you feel like you are being crazy and unreasonable. but I stood my ground. And I plotted. I started talking about judicially reviewing any decisions regarding care packages (or lack thereof). If we were failed by the system, how many others were? I started talking about media. I wondered aloud what Haringey would do if I got together all those families who had been fobbed off like us and started a group action. And suddenly, all those busy people from continuing care, social services and various community teams managed to get together and sit around the table. Overnight, with nothing changing in our circumstances, we went up from 3.5 hours to 57 hours of care a week.

I like to think that I am an effective communicator. And that having been a litigator for the last ten years would have equipped me with some serious skills in the art of argument. In addition, it’s clear that I am very annoying and a serial complainer, but I still believe we weren’t awarded all those extra hours just to shut me up. In the first place someone clearly did not do their job.

Whether it was intentional or just plain negligent I don’t know.  When I speak to families in similar circumstances I find it is a story that is repeated across the UK.  People are left to care for their chronically ill and/or disabled children at home with little or no support for years. Many are completely unaware that they could get help. Some are told (read: lied to) by professionals that they are not entitled to any help and it would not cross their mind to challenge the authorities.  Further, although there is underlying legislation that ensures that the children with special needs are entitled to continuing care packages the implementation is left for the local authorities. The whole system is a postcode lottery with children with similar needs being offered widely different packages depending on where they life.  It is also very much a “who shouts the loudest gets the most” type of a system. Great for those like me with a big mouth and litigious nature, but how about those who are not as articulate? Or those who don’t speak English as their first language?  They are left to drown.

The sceptic in me thinks that people are sent home to see if they sink or swim. Even if there is 1% chance that you swim the savings are huge.

What would help? From a long term perspective the system is broken and obviously needs reform. There needs to be a transparent process that ensures that all children with continuing care needs have their needs assessed in a just, equal manner. But what needs to happen right now is that anyone with a child with continuing care needs should be provided with clear information what help is out there. People need to know how the system works and who to contact. And no, it is not a question of people just googling a little bit – this information is hidden, buried, inaccessible.

Struggling to get a care package for your child?  My advice is become a nuisance (if you are not one already). Be direct – I have found it rather liberating that as a parent I don’t have to adhere to certain level of professional courtesy I had to in my past life. I don’t shout or swear but neither do I shy away from confrontation.  Have everything in writing. Put in official complaints. Threaten with legal action. Contact media. Speak to your MP. And spread the word to other parents of special need kiddos – it’s good to help each other!

P.s. We now get 6 nights of care at home. We can sleep peacefully knowing there are trained carers who love spending time with Freya looking after her.

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