A mistake… or something else? Feeling queasy about continuing care

It’s been overall a pretty crappy week. After the little lady’s fun-filled birthday celebrations I started feeling a bit funny. First I thought it was directly related to the amount of sparkling wine consumed (child’s birthday is as much theirs as it is their mother’s) but soon it came clear I had caught some sort of cold-ey flu-ey bug.  My other half works so I spent long afternoons feeling pretty awful and looking after a very active 2 year old, who fortunately, so far seems unaffected by mommy’s snottiness. But it was a stark reminder about how parents like us really ill afford any of our own problems: there is no putting on cartoons and snoozling in the background – my kiddo needs 24/7 awake trachy-vent trained supervision to stay alive.

Thursday afternoon the doorbell rang and the postman delivered a recorded letter. “Dear Freya, As you will be aware, a continuing care assessment was recently carried out by the Complex and Continuing care Assessment Team at Whittington  Health….. Freya is entitled to 48 hours of care a week” .

I was gobsmacked. Our hours had been pretty much halved. And whereas there had been plenty of talk about the assessment it was no where near being completed.  In fact after complaining to the head of the service  I had had the assessor replaced after she turned up at my house with shoddily completed paperwork (including gems like “Freya can walk and stand independently… Freya has little or no head control” and “Freya goes to a secondary school”). The assessor had not even tried to get any updates from any of Freya’s medical and therapy teams.  I had duly followed everything up with an email stating that for avoidance of doubt I was refusing permission to share the assessment with the panel and was in the process of trying to get a date in the diary to have a new assessment done.

So I started digging.  The continuing care team confirmed that the minutes of the panel meeting state “19 June 17 Panel did not discuss case will be deferred”.  Further no one in the team was admitting to presenting Freya’s case.  So I managed to get through to the person who wrote the letter (I say manage, as he had helpfully misspelt his own name on the letter so my initial emails were bouncing) and got a holding reply but still, days after, I am sitting here, sharpening my nails and waiting for a reply.

Clearly a mistake, you must think. No need to get one’s knickers in a twist. It may be, but just within last week I have heard of two other trachy vented families who have had their hours cut or agreed packages altered without any due process or any assessment.  It also coincides with news of a leaked government paper imposing nearly £190 million cuts to our local area, including both Freya’s local and tertiary hospital as well as NHS continuing care services that we get our home care services from https://www.theguardian.com/society/2017/jun/20/leak-shows-devastating-impact-of-planned-nhs-cuts-in-london?CMP=fb_gu).  With my past experience I knew that authorities regularly push through money saving measures that are not only totally illegal, but have little regard to the safety and well being of disabled and chronically ill children.

All of this got me very anxious. Stressed. Angry. And let me explain why.  Looking after a medically complex kid is hard. We get up every morning with one goal – to keep Freya alive. We never know what day brings. As an extreme, but real example one morning I got up, had coffee, did emergency tracheostomy change with my partner and performed cpr on our daughter whilst waiting for an ambulance. Then mere 5 months later we got home from that hospital trip.

I am not saying every day is like that or that we do not have special, wonderful days – we do, but in our household when sh*t gets real, it gets really really real.  And however much I do not like the fact that I have strangers in my house looking after my baby girl every night it is something we desperately need to be able to keep Freya as safe as we can – and to survive as a family. Whether we try to concentrate on viewing our lot as a glass half full the truth is that Freya’s medical condition and prognosis continues to devastate our lives and not a day passes without us acutely feeling the losses our new normal has engrained in our lives.  So when someone tries to make our lives even more difficult by attempting to cut the help we get I automatically switch onto a proper dragon mama mode.

All of this has got me thinking. Whether or not the letter was a mistake it is clear that CCGs around the UK are trying to cut children’s care packages and that they do not always play clean. I am lucky in the way that I have spent my whole adult life as a private sector lawyer and am working now on educating myself about what can be done legally to make sure that Freya  – and kids like her – get all the help they are entitled to.  Whereas I am not in the position to give anyone legal advice on this, I can outline a few steps to help families who are worried about their children’s care packages.

  1. No one can cut your package without an assessment – it’s totally illegal.
  2. You are allowed to read the assessment and contribute towards it before it goes to panel. Take your time and make sure that it reflects properly what is going on with your child. For example, if your child needs 24/7 awake supervision insist that is included in the assessment and ask your child’s medical consultant to support this statement. The panel is less likely to be able to cut night hours if you can show that there is no reasonable way for you to get proper rest without help.
  3. After panel, you are entitled to the decision in writing. It is surprising how often CCGs miss this essential step. You need to push for the written decision – without it you can’t challenge it.
  4. You are entitled to see all the policies they have considered making the decision. Ask for them. You are also entitled to see the file on your child by making a subject access request – see https://ico.org.uk/for-the-public/.
  5. Get legal advice early. Even with the cuts to legal aid there is a good chance you can get legal aid for advice and even for any legal action you might need to take.  Lawyers can make sure your child’s case is properly dealt with and certainly won’t charge you any money unless they specifically tell you beforehand. There are some strict time limits with public law challenges so you are better off seeking help early.
  6. Feel like you are stuck in the limbo? Feel pressurised or bullied by professionals? That is not ok.  Continuing care and CCGs both fall into the NHS complaints framework so you can raise concerns with PALS (Patients Advice and Liaison Service), your local NHS Healthwatch or through the official complaints procedure of your local NHS trust.  Worry about knowing what to say? All of these avenues are supposed to provide you with support with lodging your complaint.

So in the coming weeks the situation about Freya’s care package should clarify – and I will keep you posted. One thing is for sure, if essential help we need to keep Freya safe and healthy starts being cut Haringey will find one big fat fight on their hands.

Still think austerity and cuts work and are just skimming off the unessential fat? Nope.  It affects kids like Freya and family like ours and stops us being able to keep her safe and provide her the best quality of life. There is literally no group more vulnerable than disabled and medically complex kids and there are direct cuts around UK  making lives of families in most desperate of situations even worse.

Are you going through something similar? Get in touch – I’d love to hear your story! Together we are stronger. Have you challenged a panel decision of NHS continuing care? Get in touch! I’m interested to pick your brain!