Accessibility

My name is Elaine and I have been married to my husband John for 23 years.  In 2002 we were just a 'normal family'. We had three children, John worked hard as a maintenance engineer and life was, in the main, good. But then something odd happened to John and he lost the use of his right leg. Over the next few months a few other strange things began to happen to him as well. It took two years before eventually doctors were able to diagnose that John had Multiple Sclerosis.

We realised that we needed to adapt the house to make life easier for John - and we were advised that we could be eligible for a Disabled Facilities Grant, to build a ground floor bedroom and wet room. Although, as John was still working and earning, we were told that we would have to pay the first £156,000 of any building works.

In late May 2006, literally just as the extension was finished - thank goodness we hadn't waited any longer - John suffered a huge relapse, which resulted in him only able to move his head. His legs and arms, along with various other parts of his body, had given up and our lives were again turned upside down. 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 learning how to dress, feed, toilet, bathe and hoist John. It was like looking after a 6ft, 16stone new born baby.

Despite all the visits from specialists, nobody told us that we could actually get some hands on help. Then 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.

It seemed really scary at first, registering as an employer, recruiting staff, dealing with tax, National Insurance and Public Liability Insurance, but it actually wasn't that difficult and was fairly straight forward. If you have a computer working out tax and National Insurance is easy.  Most Local Authorities offer a payroll service so if you choose to use it, it's even easier!

I quickly got to know the girls in the finance section of direct payments as I was almost constantly on the phone to them asking, 'how do I do this' or 'how do I do that?  Can I do this or can I do that'? Between us, we got to grips with it.

Although John was by now very severely disabled, his mind wasn't and one thing John and I felt very strongly about was that 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 have to get up at 7.30 if he didn't want to, nor did he want his lunch exactly at 12pm or be put to bed at 6, or 10 o'clock because it suited someone else. This was about HIM we wanted John to stay in control.

We quickly learned that one of the biggest advantage an individual budget gives is the freedom and flexibility to be in control and do what you want, of course providing its legal and within budget. We were less restricted than we were with direct payments. For example with direct payments 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.

A personal or individual budget also impacts far more widely than the individual. Only recently one of the vital cogs in our wheel broke. My mum became very ill and without even thinking about it, I was able to pull in more hours from our personal assistants, ensuring home ran smoothly while I was with my mum and dad when they needed me for a change, usually it's me needing them!

Again, we were in control dictating what support we needed and when, with direct payments it would have been possible but wouldn't have happened immediately when we needed it to. 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 tailor a care package to suit each 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.  We are in the process of setting up a Peer Support Group in St Helens to try and reach out to those people who want to ask 'a daft question', who need to know that they are not on their own, who may be looking to access support and don't know how to go about it, who may be frightened of asking for help for fear that they or who they are caring for may be put in a home or they will even lose their home and savings.  It's sometime easier to ask someone actually experiencing the same or similar themselves.

Our transition from 'normality' to the sheer terror of serious illness and disability, from no support to direct payments and now self-directed support has not been easy. I am not pretending it has, but more has gone right than wrong and we know where to turn if we do hit a problem. We are now IN CONTROL and making sure we get the most out of each day.

Last Updated : 20 January 2011. Page Author: Paul Ferguson.

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