Red tape breaks carers' will

AN INCREDIBLE bond has formed between Mark Youngs and Mike Jeffery.Since Mike began caring for Mark in February this year he has not only become his carer but also his confidant and trusted friend.

AN INCREDIBLE bond has formed between Mark Youngs and Mike Jeffery.

Since Mike began caring for Mark in February this year he has not only become his carer but also his confidant and trusted friend.

But now because of a bureaucratic wrangle which has sapped his will, Mike said he feels can no longer go on and has been forced into handing in his notice.

This bombshell has left Mark having to begin the heartbreaking search for another carer who can match Mike's unwavering commitment and dedication.

Mark is 35 and has a type of brittle bone disease called osteogenesis imperfecta and can do very little for himself.

Highly intelligent but in an incredibly vulnerable position physically, Mark has put his faith in Mike to do everything for him and trusts him implicitly.

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Mike feeds him and washes him, washes and irons his clothes and even decorated his Ipswich bungalow for him.

He takes Mark to meetings of the Brittle Bone Society of which Mark is a trustee and even became a member himself.

When he took over his care he also made sure his diet was changed cooking him fresh food from scratch.

Since Mark employed Mike, the pair have become firm friends – they will go to Bingo together and to a nearby pub for a drink. They even go back to Mike's mum's house for tea.

Mark said his carer has also helped decorate his house which he said was a complete mess beforehand.

He said: "Before Mike came I did not get to do very much – each day was much the same as the one before.

"All the carers I had in the last few years did not seem that interested in bettering my social skills and such like.

"They seemed more interested in what they wanted to do rather than what I wanted to do."

Mark employed Mike under the social services direct care payment scheme.

It enables Mark to take control of his own care package without having to have lots of money in his bank account.

People are encouraged to employ their own carers, even setting up payrolls and drawing up their own codes of practice.

He said: "I read the book and watched the video and consulted my family about it.

"It was portrayed as such that I would be responsible for the hiring and firing of my carers and you could have who you felt was best for the job.

"It seemed a good way of taking control of my own care plus being able to pay the carer a decent wage."

Although Mr Jeffrey is not a qualified carer on paper he has looked after his own mother who is a paraplegic since he was 10-years-old and also nursed his terminally ill father for five weeks until he died last summer.

But although he is happy to commit to Mark 24 hours a day Social Services said there should be a team of carers on hand if Mike is ill or needs a break.

This is something the pair were setting up but in the meantime they found a temporary carer while that was getting underway.

Social services were also concerned because no police checks had come through for Mike yet, although he claims that he posted them around two months ago and is waiting for them. There was also the problem of a lack of references because Mike said his former boss from the 12 years he spent in Germany is now in jail.

However Mark has references both verbal and written from friends of Mike and friends of his family and is more than happy to keep the arrangement going.

The situation is upsetting for the both of them but none more so than Mark.

He said: "I am disgusted by it and cannot find words to describe it."

A spokesman for Suffolk County Council said: "Direct payments is a government initiative, which is now set to grow fast in Suffolk. It allows the user of our services to choose and employ carers themselves, allowing greater flexibility for their own needs and wishes. Suffolk PASS (Personal Assistant Support Service) can help with the administration and management of the carers.

"Although Direct Payments allows people to choose their own carers, Suffolk County Council remains responsible for seeing that the money is being spent on suitable care.

"In this case, our staff had some concerns, so we have become involved to secure Mark's position."

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Mike gets him out of bed and washes, dresses and toilets Mark all before around 10.30am.

Then the pair usually go into town and does some shopping and go and get something to eat before going home and doing some work on the computer.

Mike will set up the computer for Mark and he can then operate it himself.

If any new software needs going in Mike is the one to do that.

As trustee of the Brittle Bone Society Mark works most of the time on making sure awareness of the society and the condition grows.

He is also taking a course in computing so is often working on that.

Mark's medication also has to be given to him.

In the evenings he said they might stay at home and play a game, perhaps scrabble.

Sometimes they might go out and play bingo or go to the pub.

Then it is time for Mike to put Mark to bed again.

Osteogenesis Imperfecta (OI)

OI is the medical name for Brittle Bones. Brittle Bones refers to a range of conditions resulting in the protein structure of bones, causing them to break more easily.

There are many different types with characteristic features ranging from person to person.

Some will have spinal curvature or bone deformity but with less severe types the bones are more likely to fracture especially before puberty.

Sufferers will often have a triangular face and have loose joints and low muscle tone.

Most cases of OI are caused by a dominant genetic defect, some inherit the disorder from a parent, others have no family history of the disorder.