The (inevitable) political one

Elections. Whether you rejoice in the small government approach of  the other side of the pond or rejoiced in the victory of the left in France there is a distinct smell of change in the air. Here in the UK parliamentary elections are around the corner. After the emotion provoking brexit referendum last year there are plenty of bruised egos and  irreconcilable differences amongst many.  The country feels distinctly divided.

This post is not about who to vote for, but rather about issues faced by families like ours and how these elections affect us.

Availability of health care

There is an avid discussion going on across the globe about what level of health care should countries provide. I’m not even going to start on whether countries should provide a reasonable level of universal healthcare to their people – it is a given. Anyone arguing otherwise should walk a day in our shoes and they would realise what a blessing state provided health care is for those battling with pre-existing conditions. In the UK the discussion centres on the future of the National Health Service. It is a widely accepted view across the political spectrum that the NHS, in its current form, is not delivering the level of service it should. As a parent of a medically complex child I sadly agree.

Let me explain. As I am drafting the first draft of this blog I am at a local A&E, with Freya fast asleep on a trolley in front of me. We were picked up by ambulance and have generally been looked after OK. However, this is miles away from the level of treatment my daughter should be getting right now.

The problem is that, although there are increasing amount of medically complex kids there are insufficient hospital beds to support them when they get ill. Let me demonstrate using Freya as an example She has a trachy and a gastrostomy. She has a ventilator she uses when she is asleep. When she gets ill she usually needs more time on her vent and often some good old O2. It is fair to say she has complex medical needs, but does spend majority of her time out in “the wild” (as not at a hospital or an institution).

When she gets ill to the extent that we need help (we manage a lot of highly medicalised stuff at home) there are two usual outcomes: she’s acutely very ill, we land in resus and promptly get retrieved by a specialist team to a specialist hospital ward elsewhere. The other being that she is less ill, but too ill to be at home and we go to a local. She has a special paediatric passport so we get seen swiftly, but because of the complexity of her medical issues we can’t be admitted at our local. London PICUs are generally not particularly keen on kids who need support on a fairly low level; Quite understandably they want to save their beds to the very sickest, making sure those who are the most critical get the level of specialised medical care they so desperately require. A toddler who needs a bit of IVs, even if medically complex, should not be in intensive care. It’s not good for the kids, their families or the NHS.

Whereas one could potentially argue that doing things badly is more acceptable if it is – at least – done cheaply, the current system is not even that: It is expensive, not delivering the most appropriate service to the end user and it is inherently dangerous (longer you leave ill kids lingering in A&Es waiting for specialist care more chances you have for it all going badly). What happened this time? Fortunately Freya did well, but we did wait for 13 hours before being transferred, majority of this in the A&E, and with myself and my partner being the only tracheostomy and ventilator competent people around.


Cuts, cuts, cuts. There is no money,  the services go to scammers. Television programmes about Romanians who fly over here and get rehoused at a drop of a hat. The media is portraying a very one sided view on what is going on and creating a culture where people blame other service users for the crap services that they get, rather than the (often incompetent) service provider or the Government that cuts mercilessly from those most in need.

As a mother of a chronically ill child what do I see? I see families, stuck in hospitals for months, waiting for a safe home to go to. I see young siblings living in a crazy limbo of hospital life. I see parents, tired, being pressurised by various professionals to risk their child’s life and take them to an unsuitable and unsafe property. I see professionals cutting corners and disregarding conclusive evidence because they know that if a family must be rehoused before discharge it can add months onto hospital stay, denying that bed from another needy child.

We fought the housing in Haringey and I can say hand on heart they weren’t “soft touch” on any account.  In fact they were so keen on denying us any help they ignored their own rules, the laws of the country and common sense. We felt hopeless, pressured, desperate.  But we also knew that we were right and facing a legal challenge and bad press Haringey – begrudgingly -finally caved in.

No family should go through what we did. People in need should not feel that they are demonised or treated  like second class citizens because they need help. Whatever the cause of the housing crisis (which may be less to do with Bulgarians than successive governments – both Conservative and Labour – selling off council houses and not building enough new ones) check what your candidate says on the topic – the housing crisis does affect majority of us (and not in a good way).

Position of parent carers

I get paid £60 a week to look after Freya. My other half (who works full time) gets nothing. I am in no position to go to work; our CCG (who manages the NHS services in our area) does not allow the carers from the nursing agency to look after Freya by themselves; if we had to hire to people to look after Freya during the day the funding we get would last for 15 hours a week. Even if we wanted to go with this option our care agency cannot supply the hours (probably due to the poor pay they offer their employees on zero hour contracts). As our CCG, despite our numerous requests in the last 3 months, has still not been able to provide us with a Personal Health Budget, which would allow us to purchase services from other providers.

We may be able to revisit this in a couple of years if Freya’s condition improves or an/or when she goes to school.  We are lucky – although having years off work will affect my career progression and income – I have both education and experience behind me.  It won’t be easy, but, fingers crossed, I should be able to get myself up and working again.  But for many, entering the workforce after years of being a full time carer can be very challenging.

People who look after sick and disabled relatives save government millions of pounds. Carers should be awarded and supported, not marginalised and pushed out of the society. With cutting of social care budgets further pressed carers are often pushed to the breaking point, potentially leaving the Government to pick up the bill for professional care and families broken up.  Whereas Labour is talking about increasing carers allowance to match unemployment benefits (they don’t at the moment) and the Conservatives propose a right to a year’s unpaid leave for people taking time off from work to look after family members from where I stand it is clear that neither go far enough.

Access to justice

Legal Aid is one of the areas that has been severely cut in the last decade. Family matters, medical negligence cases, human rights applications have all been affected.

Finding out your rights is hard. Challenging authorities is difficult and emotionally taxing. Going to Court is scary. However, families like ours need to do this every single day of their lives, whether it is to fight for sufficient care packages, suitable housing, getting their child the education they deserve or challenge decisions by social services to take disabled children into care (which happens a lot more than you’d expect – and often with very flimsy, unreasonable basis).  Whereas some cases affecting children do qualify for legal aid even fairly modest nest eggs held by parents can make them liable for funding their own legal costs – which for can easily run into thousand even before you see a judge.

This applies to even cases of life and death – like in the case of baby Charlie currently heard in the Court of Appeal. Charlie suffers from a rare mitochondrial depletion syndrome and his parents have raised over a million pounds to take their son to the US for experimental treatment. In turn, his treating hospital is arguing this is not in Charlie’s best interests and have applied to the Court for a permission to turn off his life support. Charlie’s parents were not granted legal aid to defend their case (see this excellent article for further commentary:

Whatever your personal view on right to life / right to death cases it cannot be that parents in such a difficult position cannot access free legal advice. Very few of us could afford to defend such a case – the costs can run into hundreds of thousands of pounds. Where a child’s life literally hangs on the decision us as a society must step up and provide an equal footing to the parties to present their claims. What is the point of having rights if you are denied a chance of enforcing them? We all need access to justice.

So who to vote for?

Well the decision is yours, Don’t get persuaded by promise of shiny things or put off by scaremongering. Think about what public services you value and how you think these should be funded. It’s not only about voting with your heart or your mind – it’s about consulting both.

P.s. Freya update. Our hospital trip was caused by rhinovirus last week and we had to do three nights in hospital. However disappointing it was to break our longest sprint in the wild sans acute admissions it got me thinking. Firstly, thank goodness for her trusted ventilator – it made a difference between being stable (albeit unwell) and critical. Not going to pack away that bad boy quite yet I hope. And secondly, we are getting better at bugs.  Last time Freya had rhinovirus we almost lost her; she was fully vented, paralysed and very unstable for a good 10 days and we spent a month in PICU. This time she needed a smidge of oxygen, bit of IVs and we were out after three nights. Progress!

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