Wednesday, 28 January 2015

The non-transparent Panel

The non-transparent Panel.... By this I do not mean the type of panel that creates a divide or covers something up (although neither may be too far off the mark!)

I mean the Panel that everyone, young or old, who receives help or support from Social Services needs to go before. The Panel which has complete control over what services you are allocated. The Panel that decides how easy (or difficult, or impossible) your life is.

Accountability and transparency are frequently heard buzzwords, especially when things go wrong. They can be heard in all areas of life - in public services (Social Services, the NHS), private business; indeed they were even uttered during the MPs' expenses scandal! When you look on our Social Services web page, these two words can be seen everywhere.

But what do these two much-used words mean? The Institute of Fundraising defines these words as the following:

"Accountability is about being responsible to someone for actions taken, about being able to explain, clarity and justify actions. It implies that someone has a right to know and hold an organisation accountable, and that the organisation has a duty to explain and account for its actions".

"Transparency is about being easy to understand, and being open, frank, and honest in all communications, transactions and operations".

"Accountability and transparency go hand in hand".

In our experience, accountability and transparency are not very obvious during our dealings with our local Social Services, although I do acknowledge that other parts of the country may work differently.

The Panel in our area (for children, or possibly only for disabled children - I don't know) meets once a week, for half a day. They decide EVERYTHING * from the approval for a basic piece of equipment that may only cost £100, through the allocation of nursery places, respite care, all the way through to personal budgets, which depending on your circumstances may add up to thousands of pounds. Given this wide scope, it is reasonably obvious that half a day a week for an entire local authority area is not enough, which consequently means there is a LONG wait for requests to be considered.

* I think. I don't know for sure. I've never been able to find out. It's a non-transparent Panel.

Now, this Panel. You can ask them directly for something to be considered, but the normal route is for a professional (i.e. a physiotherapist, if it is for a piece of equipment, or a Social Worker if it is something regarding a personal budget) to request funding from the Panel on your behalf. However, you can provide supporting evidence in writing which the professionals will submit for you with their recommendations.

This time last year, Jessica's health deteriorated significantly. Because of the changes in her condition, the (minimal) support we had back then became unsuitable, and it was withdrawn. However, it wasn't replaced, and we were left with a very sick child and no help whatsoever. Needless to say, we quickly hit a crisis point where we were not coping very well.

We had a Social Worker, who to put it bluntly, couldn't have cared less. We emailed (she very rarely replied), we rang (she would hang up on us), we asked for information about what support was out there that would/could be suitable for Jessica (she said there was nothing, which clearly wasn't true as Jess now does access suitable support, along with many other children who were on this person's caseload).

For several different reasons, we were then allocated another Social Worker. She was lovely, and clearly cared about the children she was involved with, but it quickly became apparent that her hands were completely tied.

The new Social Worker made lots of recommendations to the Panel regarding the support that we desperately needed at that time. These recommendations were supported by emails I had written outlining the situation we were in and why we were asking for help, letters from my GP, letters from Jessica's consultants and sleep diaries that showed we were often up every 10-15 minutes replacing Jess' oxygen mask in order to keep her oxygen levels safe. Obviously, the flaw with all this is that, given the number of requests the Panel has, would they ever have had time to read through all this in a half-day session? Possibly not. It certainly didn't seem to make much difference. Neither did the recommendations made by the Social Worker, which begs the question why they employ professional staff if they are not going to listen to professional opinions.

What we quickly found out was that the Panel is an obscure enigma. We don't know who sits on it, you don't know when your case is going to heard, no-one contacts you with the results once your case has been considered (it can take weeks of emails and phone calls to find out your case has been heard, and it is only with great difficulty that you can find out exactly what has been decided*. You definitely are not able to find out the reasons why they came to the decisions they did.

*please also bear in mind that whatever you are told they have decided may be changed at any time, if there is a "mistake" with the results being put into the computer.

We repeatedly went back to the Panel to appeal its refusal to give us support and re-submitted our requests. I will add here that our requests were not huge at all - it was pretty much to reinstate the level of support which we had had previously (which they had already assessed us as needing) but in an environment that could cope with Jessica's new needs. However, navigating this process on no sleep, and with it being as obscure as I have described above, was very difficult. We obtained advice from the wonderful people at Rett UK, who felt that our local Social Services may not be meeting their statutory obligations towards Jessica, and the need to involve lawyers was mentioned and phone calls were made. Additionally, they offered to come to Panel to support us, which apparently they have done for other families in other areas of the UK. However, our Panel don't even allow the Social Workers to attend, let alone families or their representatives.

So where is the accountability and transparency in all this? I'm struggling to find it. I'm sure there are official and legal ways to get the information (my husband has been wondering about trying to invoke the Freedom of Information Act). But when you are going through this process, especially if you are asking for respite and are at a crisis stage, you really do not have the ability or the energy to do that - you are just trying your very best to keep you and your family above water and alive.

The impact that the decisions which the Panel makes have on families is huge - and in some cases will be life-saving, or life-destroying. This is a huge responsibility, and we are all aware that there are only limited resources to go round. But why can't the process be more transparent? Why don't they want to (visibly) take some accountability for their actions? What is there to hide?

I'm going to outline my tactics for how we negotiated getting a Personal Budget for the basic level of support that we needed, in case it helps other families. However, my style may not suit everyone, or indeed be the best approach for all Social Services around the country!

1. We decided what level of support we needed. When we asked them what help they could give us, the answer was none! The bare minimum we needed to cope and keep the girls safe was the one night a month respite that we were previously receiving - we asked this to be reinstated and also for help in the evenings to get the two girls bathed and into bed, as due to Jessica's condition and patterns of seizures etc, I couldn't safely manage this on my own and my husband couldn't guarantee to be back in time because of his work.

2. We made sure that our requests were realistic. We talked to other families locally and also Rett UK to see what other families around the UK received for children similar to Jess. It turns out that the requirements that I have written about above are not at all extravagant or unrealistic to expect - in fact, a lot of children similar to Jess get a lot more help.

3. I was non-negotiable. I know some people may advocate going in high, and then negotiating down, but that is not something I personally have ever been good at (I'd be useless on The Apprentice!) Also, given the lack of direct contact we were able to have with the Panel, I'm unsure how I would have even done this, and I think it would have dragged the process out longer. In my view, standing my ground and refusing every offer they gave us (one night respite every 4 months anyone???!!!) and repeating my request, showed I was serious and gave me some credibility.

4. I was very specific. We outlined what we wanted, as I've described above. But I also set out how we wanted it to be provided. As I said before, our first Social Worker had said there was nothing they could offer us that would meet Jess' needs, but this simply wasn't true. We stated that we wanted Jess' one night respite a month to be provided by a specific organisation (which I had already visited and was happy with), and gave the Panel details of their costs, and the care in the evenings to be provided by a specific agency, and provided the agency costs.

5. We submitted supporting evidence, like letters form doctors etc - I have no idea if they were read or not, but it must all go on file somewhere and, at the bare minimum, just by its presence, showed that we were a family to be taken seriously, which may help us in the future.

6. We didn't give up - we kept going back to them. They may have finally agreed to my requests just to make me go away!

7. We didn't, but we should have, kept a record of every contact we had regarding our request. Every phone call made (date, time, who we spoke to, their response etc), every email, every contact. I now have a notebook where I write down every call I make to Social Services (it doesn't matter what department) and I keep all my emails. Even if they are never used to form a complaint, it is still helpful to be able to say "but (insert name) informed us that... " or "but I requested this on (insert date) which was 6 months ago....." etc etc.
Eventually (four months later) Social Services did agree to a Personal Budget for us, which combined with the Care element of Jess' Disability Living Allowance covers the cost of our requests.
This was a very stressful time, made far more difficult and distressing by the very people who are supposed to helping and supporting us. And any Social Worker who hangs up the phone on a parent of a disabled child, who is sobbing and quite clearly stating that they are not coping and can no longer keep their children safe, should be ashamed of themselves.