Stuck in the middle with you (musings about services that just aren’t delivered)

Last couple of months I have written a lot about the struggles we are currently facing getting Freya the services at home we need to keep her alive & well,  and have some sort of semblance of a life other than a desperate scramble to manage every day.

Since Freya was born I’ve encountered many parents of sick and disabled kids (in real life and online) and encountered a recurring theme: there are services and funding out there, there’s clear entitlement to these services, but somewhere on the way there is a disconnect and the families, who desperately need the help, are not quite getting it.

It made me wonder why.  If there is an entitlement, a right, clearly stated in the law, why are the authorities not delivering? And how can families like ours enforce those rights?

These questions are wide and complex and by no means can be resolved in a blog by a lawyer on a career break. But what I can do is list a few ideas that might help those grappling with inadequacies of the system.

  1. Know your rights

The first three months of Freya’s life were the hardest. We went into a hospital expecting to leave within days with our little bundle of joy; instead for weeks we got stuck in hospitals with a life-threateningly ill child and an endless parade of doctors with bad news. Being sent home without any help made things go from life-devastating to near breaking point. The thing that “saved” us was Freya getting ill and having to be hospitalised and me simply refusing to discharge her.

What really strikes me, viewing it from where we stand today, was how quickly and eagerly we were pushed home with not much more than a second hand suction machine and a number to call for community nurses who work from 9 til 5. It wasn’t that we weren’t asking for help – we were – but we were either being told a big fat NO or not even being considered for help (a special shout out to Haringey’s Disabled Children’s team that just “forgot” to ever contact us).
Now two years down the line we have a clearer idea what kind of support Freya should be getting. Don’t get me wrong, by no means I think I’m an expert, the system is simply too complicated, but we’ve come a long way from knowing absolutely nothing.

Finding out what kind of help your child ought to be getting is not simple, but is the number one job in making sure you are properly supported. Don’t take what people tell you at face value – particularly if they have a vested interest (read: professionals who work for bodies funding the help you seek). We got told Freya wasn’t entitled to any NHS continuing care – and she was. We got told we would never get rehoused due to our former home being unsuitable – and we were. Every single care assessment – whether carried out by health or social services – has been initially presented to me with budgets lower than we have ended up with once I have taken my red pen to their handywork.

2. Read before sign

Sounds simple, right? Yes and no. First hurdle is getting copies of the crucial assessment documents – I have found that a few professionals actually even bother sending these to the parents before they present it to a panel. Then is to get ALL of the documents – even with prompting none of the assessors have ever sent me full sets of the assessment documents until I have pushed for it.

When you get them read them. When you do not agree what is written in them, point it out – I’ve had assessments saying Freya goes to secondary school and assessment leaving out significant issues – like that she has moderate hearing loss.  If in doubt put it in – the hours are awarded on points basis and it is of utmost importance to include all the issues that affect your child and the care they need.

One thing that I find utterly heartless is when tracheostomy parents get denied help at night. If your child breaths through a tiny plastic tube that can get blocked at any time I think automatically you should be given the option of having night time carers. One thing I have found useful to write down the night time tasks in timetable and showing this to an assessor.  The timetable of feeds, medications and nebulisers alone mean that person looking after Freya would not get more than an hour’s uninterrupted sleep, and that is not even taking into consideration that Freya needs regular suctioning to clear her tracheostomy even during asleep hours.

I have often felt – as well as been outright told – that some professionals expect parents like us to be regularly putting in some night time care hours – after all, parents of medically typical children also have to “do nights” when they kids are teething, ill or just being plain little pains in the bum.  This is total and utter bullshit.  Whereas I sympathise with any parent on night duty, a medically typical kiddo with a night time ailment and child who requires life maintaining treatment from a specially trained adult to stay alive are not the same thing.  They not even the same ballpark. So don’t let anyone tell you so.

3. Get a decision in writing

I am not exaggerating but it took me initially a year to get Continuing Care decision in writing. A YEAR, including not being informed of initial decision to turn us down, when our I was new mother, getting over a traumatic birth and news that my child was unlikely to survive childhood.

Why is it so important to get the decision in writing? Many of us get care packages put in place and hours provided without no official documentation ever been issued.

Well, firstly a verbal promise can easily turn into he said / she said if what has been agreed ever becomes an issue.  People leave jobs and many CCGs in my experience have rather poor systems  of recording information. A good practice may be to follow telephone conversations with an email confirming what was discussed and agreed (and disagreed).

Secondly, if you do not have a decision you cannot challenge it.  By law, you should be able to challenge any local authority and/or NHS decision you do not agree with. The problems is that you cannot do so until you get a decision.  We have had this issue with both NHS continuing care and housing. Haringey is notoriously bad for housing issues and I have heard of several instances of Homes for Haringey failing to provide decisions in writing for months and months, therefore preventing the applicant to take matters further.

4. Pick your battles and pace yourself (“the sleep on it” step). And then fight, fight, fight.

An overwhelming majority of the parents of disabled children I meet tell me they find continuously having to fight to get the appropriate services in place for their children hard and exhausting. Whereas pre-discharge parents get significant support to get care arrangements etc in place, once discharged parents are largely left to fend for themselves.

As those who follow my blog know I have spent best part of this summer busy in battles trying to ensure that Freya’s home care is properly arranged and that proper arrangements are in put in place for her to attend a nursery this autumn. Both matters have been so awfully dealt with that our family has been put under a great deal of stress and anxiety for the past months. I have felt so angry at these people, whose job is supposed to be that Freya’s needs are met, but who almost seem actively working against us .  At the same time smaller irritants of struggling to get the right deliveries, getting in place respite arrangements – even getting the housing association to carry out necessary maintenance work – keep nagging at the back of my mind. I go to bed exhausted, struggling to sleep, to wake up tired, angry and anxious, worrying about what crap is likely to come my way that day.

A very wise fellow mother told me once that we have the option either to sink or swim. Choosing to swim does not mean we need to be going forward full speed at all times – we can stop and tread water, we can stop and float – even enjoy the scenery for a bit. It is important to remember that every fight does not need to be pursued – at least immediately. Granted, I feel like shouting at every professional I feel is not doing their job properly, but then I need to stop myself and ask – what can we gain out of it? Choose the battles that are important and put your energy into pursuing those, using all resources available. It is hard to give yourself time off the battles, but do – feeling angry and anxious all the time will affect how you are your family live in a negative way. Granted, detaching for circle of negative feelings – particularly when the fight at your hands is one that needs pursuing – is hard, but we also need to make sure we sufficiently look after ourselves so that we can look after our children.

5. And the million dollar question: When services are agreed, but not delivered what can you do?

This is what our main issue now. I have a letter from Rachel Lissauer, the acting Director of Commissioning at Haringey CCG in front of me with the assurance that “the CCG will ensure continuation of care for Freya at her own home…[and] will provide alternative arrangements in order to meet these, so that from 1st September the full 90 hours are covered”. It is the 30th August and we still don’t even know if anyone is going to turn up to cover Freya’s shift on Friday. With nearly two months gone Haringey CCG has not even secured an agency to take over Freya’s care; no recruitment for carers has started; with no agency and no staff there is no one to train. Rather alarmingly Haringey CCG’s latest proposal on resolving the issue was asking us to agree that the new staff looking after Freya would not need to be trained to be tracheostomy and ventilator competent according to the national guidelines, but that they could start earlier, presumably to save Haringey some cash.

As for alternative arrangements, no details of paediatric nurses or external agency have been provided to us and how the CCG plans to implement a full care package of trachy vent competent nurses for day after tomorrow is beyond me –  no one is bothering to update me. These are highly trained specialised nurses you are booking on short notice, not a mini cab service.  Calling  20 minutes before shift ain’t going to suffice. Most likely, they have left it too late now and we will face major disruption, worry and sleep deprivation for no fault of our own.  The worst thing being that Freya is going to be left with two exhausted parents too tired to properly engage with her – worried how they are going to be able to meet her medical needs which need to be prioritised over her toddler, her quality of life, needs.

What to do in this situation? Quite frankly I am not sure, but the answer definitely is not sit quietly and wait.  Firstly, put in  a formal complaint setting out what services are due (either by agreement or law) and the failure to provide these.  Include how this affects your family’s life. If your complaint does not resolve the issue (like in our case it clearly hasn’t), take it to the Parliamentary Health Service Ombudsman. Seek legal advice – some failures can be challenged in the Courts. Assert yourself, make some noise (though abstain from shouting and swearing how difficult it may be – even incompetent people should be allowed to work in abuse-free environments).  Get your MP involved. Go to the press. Blog. Tweet.  Sooner or later someone will hear.

Moral of the story? Find out your rights whether it is via the internet, peer-to-peer support or accessing the information via local or national charities providing support to parents of disabled children. Make sure that an accurate and a full description of your child’s care needs is recorded in the assessments.  You may have to ask for parts of the descriptions changed and/or further evidence sought from your child’s clinicians. Don’t shy away from confrontation if you feel the information put forward does not properly reflect your circumstances – the help you will get is based on the assessment! To be on the safe side get any decisions in writing. Pick your battles and make sure you look after yourself. Don’t let your life be consumed by challenged you face. And remember – persistence pays off.  Illegitimi non carborundum -don’t let the bastards grind you down.