Elaine's story about her family's Individual Budget

My name is Elaine, I live in St Helens, a smallish local authority situated in between Liverpool and Manchester. As things stand, each local Authority has different ways of doing things. However, the goal is hopefully the same, to achieve a firm and fair outcome for service users, carers and support services, keeping within the law and budget

I would like to get to a point that wherever you live in the country access to services and care is the same, and that is actually starting to happen with the 'right to control' which is currently out for consultation, before it is 'trail-blazed' and eventually 'rolled out' nationally. Or that's the plan.  But Is it just another 'process' to be followed quite quickly by something else!?

I would like to paint you a picture of our journey through the high's lows and back again from its very beginning to where we are now. It's not been an easy journey, but whose is? Life is what you make it, choices and decisions have to be made and the more information you have can only help you to make the decision that is right for you. 

 I've been married to John for 22 years, we have 3 children, Mark 21 who is a very young policeman! Heather 18, who has just started at University and James 15, studying hard (or so he tells us) for his GCSE's. 

Back in 2002 John started to experience strange symptoms and was finally diagnosed with MS in 2004.
   
John carried on working, but one relapse followed another.  I am used to fixing things, but I couldn't fix John, by now he was really struggling .....and I felt  helpless.
 
 Later that year we hit our first major problem. We realised that we needed to adapt the house to make life easier for John -- we were advised that we could be eligible for a Disabled Facilities Grant, to build a ground floor bedroom and wet room, but, as John was still working and earning, we were informed that we would have to pay the first £125,000 of any building works........The alternative was to wait until John was no longer able to work and then apparently we wouldn't have to pay anything.  We had no intention of waiting and to cut a long story short, we eventually got our ground floor bedroom and wet room, but because John was determined to carry on working for as long as he could we now have a £25,000 loan to deal with, but that's a small price to pay.

Families are put under enough pressure when they have to deal with a disability or illness, and the financial pressure they are then also placed under seems so unfair.  After all they are saving the State millions in providing free care for their loved ones, caring for them keeping them at home, where they belong and hopefully want to be. 
 
 In late May 2006 and literally just as the extension was finished (so it's a good job we didn't wait!)  John suffered a huge relapse. What happened next can only be described as a living nightmare.
 
 Our days were filled with visits from doctors, nurses, physios, occupational therapists, relatives and friends and in-between their visits we were trying to adapt to the massive changes that were happening to John and the knock on effect with our family. It was often mid afternoon before I was able to get dressed and at times the children had to almost fend for themselves. During all this chaos, we were all determined that John would remain at home.
 
 Despite all the visits from the specialists, nobody told us that we could actually get some hands on help, (why oh why is this still happening?) until, one day when I was feeling pretty down and struggling to cope, John's physio suggested that I contact Social Services...or Adult Social Care and Health as it is now called.  

I made the call and almost straight away realised we were no longer 'on our own' and we started the process of moving into 'the system,' in our case Direct Payments.

 One thing John and I felt very strongly about was that although John was by now very severely disabled, his mind wasn't and he should be IN CONTROL of his care needs.  We didn't want different people coming in and out of the house at times to suit them, John didn't want to get up at 7.30 if he didn't want to, nor did he want his lunch at 12pm or be put to bed at 6, or 10 o'clock because it suited someone else, this was about HIM and it really did look as though the Direct Payments would allow John to stay in control.

 We were incredibly fortunate in that the PA's we recruited were either neighbours or family, they were flexible in that they would increase/decrease their hours to suit John's changing needs - and that flexibility is key to a successful Direct Payment.

As the weeks progressed and through a combination of aggressive treatment, the fantastic staff at the Walton Centre in Liverpool and sheer bloody determination on John's part, his  strength started albeit slowly,  to return.  We found that his personal care needs were now outweighed by the need to get out and about, still difficult, but do-able.  We asked his care manager if we could chop and change his care plan to accommodate his needs, and this was agreed.

 Sadly, as a result of the huge relapse, 2 years ago John's employers forced his hand and he gave up hoping to return to work, at least for the present time.  He had to take ill health retirement at the age of 47; with hindsight it was the correct decision, however a very difficult one for him to get his head round.
 
 That's really when things started to go pear-shaped with our Direct Payments.  It's long, complicated and very boring, but the upshot was that now he was a 'pensioner' and no longer earning, his pension was taken into account with the financial assessment process and this dramatically altered our financial position.

The issue regarding our contribution and how it is calculated is still being challenged. How each local authority interprets the law is different.  We still argue that John has EARNED his pension, if he didn't work when he was well he wouldn't have been entitled to it. We are told that it is UNEARNED INCOME and as such, a good chunk of it is taken from us. Despite us still having 2 dependent children and NOT being entitled to help we would have had if John hadn't bothered to get off his backside and work. 

 In October last year, the mental pressure and stress I was under was unbelievable, eventually after some persuasion, I finally visited my GP; it seems I was on the verge of a nervous breakdown.  Dealing with John's illness, raising a family and all the worry and financial pressure we were under was tipping me over the edge.
 
 I started on the happy pills, and what a difference! That, together with the fact that we were finally introduced to our new Care Manager and guided into St Helens Pilot Individual Budget process - 'another system': however things finally started to fall back into place.
 
 We went through the self assessment and RAS, then John and I did our Support plan which actually we found easy.
 
 No one knows your situation better than you, no one else can tell your story, no one, despite years of study, good intent etc knows what it is like to be in your shoes, and your situation, the only real person to do it, is you, or someone who really knows you.  One thing that was critical, was John is first and foremost a Husband and a Father.  He wanted to regain the position and independence he once had. His children had been taking care of him and he wanted to be 'normal' again and do Dad things.
   
The financial side was a bit tricky, but we worked through it with support, and like most new things once you actually know how to do it, it becomes straightforward.

 Once the support plan and finance stuff was sorted, we went to panel and were passed first time.
 
 The biggest difference an Individual Budget gives to anything that has gone before, is the freedom and flexibility to do what you want, of course providing it's legal and within budget. Direct payments worked differently, for example each month we had to make sure John received his assessed care hours, when in fact sometimes, he didn't need all of them for one reason or another. It would have been good if we could have banked those hours for when they were needed. Now, with his Individual Budget, we can do exactly that.
 
 Financially, we know at long last exactly where we are up to, we know how much we can spend, how long we have to make it last for and we can finally plan our future, a very uncertain future but one that we have some control over. John's MS will never go away, but we are lucky that although he blips sometimes, he hasn't actually relapsed for 2 years.  He still has massive problems but they are becoming the 'norm' and we can cope, no one more so than he. As long as we can have support we can get on with life,..whatever it throws at us.
 

What went before was a blanket attempt to cover the masses, it wasn't personalised, and there were bits that worked for some not others. An individual budget is tailored for the individual; everyone is an individual, regardless of their disability and need. Never before has there been the opportunity to create a bespoke care package to suit one person. 

It really saddens me to know that there are hundreds, possibly thousands of people out there needing support for themselves or, crucially, carers literally giving up their lives to care for loved ones, not knowing that help is available.  It's not all about money, budgets, savings or feeling bad about asking for help.  It's about realising that you as individuals are entitled to live as full and productive a life as possible: whatever your situation is, however bad your circumstances are, someone somewhere can help. It just takes a little courage to firstly ask and then the rest isn't necessarily easy, but life would be boring if it was without a challenge or two. Don't dismiss new ideas and initiatives for fear of 'rocking the boat,' sometimes that boat could actually have a leak and you don't realise it until it sinks.

From my perspective as a carer who really thought 'is this it'?, who was getting up umpteen times a night and trying to support a family and failing miserably through lack of sleep, uncertainty and worry, I am now in a place where, yes given an ideal world I wouldn't be - but we don't live in ideal land.  I am with my family, my children are happy, my husband is doing well and living a very different life to one we wanted, but he is living a very productive life and achieving things that we thought would be impossible.  Most of all I am primarily a wife, not a carer.

So, back to the beginning of my ramblings!  Whatever 'they' call it, I truly hope that whatever is coming our way is a system that works for the individual; is mindful, and includes any disability, but sees beyond it; that supports individuals to live full and productive lives in a natural and free flowing way, without brick walls and legislation blocking them.  I would love to see a 'system' that signposts people at the point of contact, wherever that might be, that is the same nationwide, (no more postcode lottery!), talks the same language and links in to other appropriate agencies.   People should feel valued, not a burden whatever their disability (or not).  Two words which are being banded about, but are really valid sum it up:  Positive Outcome.