Public+Sevices+-+social+services+-+Carers+Speak+Out+(30.4.2010)

Haringey Advertiser - Wednesday, 19 May 2010 By Lucy Purdy
 * Carers demand the £750,000 given to them for respite help **

A GROUP of carers who take care of family members with learning disabilities descended on the headquarters of NHS Haringey last week to demand that £750,000 allocated for respite care is released.

The committed carers joined Sue Hessel, officer for vulnerable groups within Haringey Federation of Residents’ Associations, to deliver a letter urging the cash to be handed over so carers can take their much-needed breaks.

Hundreds of carers in the borough struggle to cope alone with family members who have problems such as autism, Alzheimer’s and multiple and profound disabilities.

Ms Hessel told the Advertiser: “We thought it was important this letter was publicly received by the chief executive’s office so everyone knows we are demanding that the £750,000 allocated by central government to NHS Haringey for carers to have much-needed breaks is released to them.

“These people are under terrific strain. They care for people 24 hours a day, seven days a week, and a lot of them have been carers for decades – we’re not just talking about six months or something. This is about many, many lives and lots of different people.”

Ms Hessel said that a Freedom of Information demand by The Princess Royal Trust For Carers revealed central government allocated more than £750,000 to NHS Haringey for carers to have their breaks.

She added that it was vital for the health of the carers for them to have respite time.

Victoria Dimandja, who lives in Pulford Road, Tottenham, said she feels “totally worn out” after caring full-time for her severely autistic son Jospeh. Ms Dimandja, 50, told the Advertiser she had been struggling for about ten years to get some respite time.

She said: “I do everything for Joseph: wash him, feed him and I often stay up all night to watch over him as well because he has such difficulty sleeping.

“Now Joseph is 20 years old he wants to be independent. He no longer wants to hold my hand when we’re out for example. But I have to do it because he has no sense of danger.

“Caring for Joseph has really affected me. He’s becoming stronger and I have back problems and feel totally worn out. Having some respite time would mean everything because it would mean I have some time to myself.”

A spokeswoman for NHS Haringey said: “No identifiable sum of money was made by the government to NHS Haringey for carers. This means it is impossible to accurately calculate any additional sum of money we have been given to support carers.

“NHS Haringey continues to treat people with long-term conditions who are being looked after by carers. We also work closely with the council and carers’ associations to help carers and the people that they look after.”

But Ms Hessel added: “If this money is released, everybody would win. It would be nice to hear some words of remorse, and then for those to be followed by action.”

//Exchange: Sue Hessel hands over the petition to Duncan Stroud, assistant director of communications for NHS Haringey at St Ann's Hospital//

= = = = =**Haringey's MP candidates demand carers get their breaks**=

Parliamentary candidates from across Haringey joined forces at an extraordinary hustings on Friday 30th April to sign a letter demanding that local carers receive their rightful respite breaks.

//"This must go down as the saddest public meeting I have ever been to,"// said the organiser Sue Hessel, who represents vulnerable groups for the Haringey Federation of Residents’ Associations.

Over 80 carers came to tell their heart rending stories to the MP candidates at a packed 100-strong public meeting at Middle Lane Methodist Church last Friday. The carers told how they struggled to cope alone with family members who had a complete range of problems, including Alzheimers, Autism, and multiple and profound disabilities. It soon became clear that they had one thing in common - they had not received the respite breaks Prime Minister Gordon Brown had promised them two years ago.

A Freedom of Information question by the Princess Royal Trust for Carers has revealed that over the past two years Haringey Primary Care Trust received over £750,000 for much needed short term breaks, but that they did not allocate it, putting it instead into general funds.

At the suggestion of Conservative candidate Richard Merrin, the candidates put all party differences aside to jointly express their concern that lifelong carers in Haringey had not been given the funding, demanding an explanation and insisting that the money is allocated for carers to receive their much needed breaks.

Text of letter below, signed by Lynne Featherstone (LibDem), Karen Jennings (Labour), Anne Gray (Green), Pete McAskie (Green), Richard Merrin (Conservative), Sean Sullivan (Conservative), Neville Watson (Independent People Together), Stephane De Roche (Independent).

//"A Freedom of Information question by the Princess Royal Trust for Carers has revealed that government monies of over £750,000 were given to Haringey Primary Care Trust so that carers could have much needed respite breaks.* We, the undersigned parliamentary candidates have heard that these monies have not been allocated for this purpose. We would like an explanation and seek reassurance that Haringey Primary Care Trust releases these monies for carer respite breaks. *(£265,099 from the government in 2009/10 and £528,397 this financial year)"//


 * //Editors notes://** 1. This PCT funding was an extraordinary payment on top of the funding that local authorities are expected to give for carer breaks. Most Haringey carers don't even get one break: Haringey Council have admitted that only one out of twenty carers got their Take a Break allowance last year (which at a yearly minimum of £100 and a maximum of only £300 cannot go far!) 2. Candidates LibDem David Schmitz and Independent Sheikh Thompson have since also endorsed the letter.

=**Fight...fight... fight... I almost wept buckets**= //Hugh Flouch, Harringay Online//

This morning I went along to a General Election hustings in the Methodist church on Middle Lane. It was held for people who are caring for ill relatives.

I got more than I bargained for.

Three words were ringing in my ears as I left, fight, fight, FIGHT. Not the sort of fight you see outside a pub in the middle of Liverpool on a Friday night; the sort of fight you watch on TV when people are struggling to survive, battling to keep their head above water, fighting the system to get some help.

For the first hour candidates and audience alike sat and were assailed by some of the most heart-rending stories of people caring for children, fathers, brothers, grandmothers with mental or physical heath challenges. Almost every account told the same story of an intense struggle to get support from Haringey Social Services. Time and time again that same word, "Fight".

Many of the carers we heard have been fighting for decades, ten years to find out what the law entitles them to; twenty years finding decent homes for their relatives and getting turfed out of one after another, thirty years looking after relatives with incontinence problems, not being given any pads and in one instance being told to use bin liners; forty years of stress and strain so great that they just can't cope any longer.

These were ordinary people who'd taken on the care of their loved ones willingly; ordinary people pushed to the edge and bursting with anger. It was hard not to be moved close to tears and I think many of us in the room were.

Quite whether this is a problem with Haringey Social Services or part of a wider problem I don't know, (I suspect it's a bit of both), but there's no denying that something seems broke.

Even the miracles had a bitter ending; like the mother whose son hadn't spoken for many many years. Then one day on the way home from a visit to the dentist, he suddenly piped up with "Where are we going mum?". The wonder of the miracle was shared with hordes of staff at St Ann’s Hospital. Then the next day, on the way to the day care centre where the lady had been taking her son for many years, mum mused to him that it was going to be a wonderful surprise to all the staff and his friends at the day centre to hear him talk. "I'm not talking to them mum. No one ever talks to me or pays me a blind bit of notice. So I don't see why I should talk to them". Mum was gobsmacked and racked with guilt; all these years she'd thought he'd been happy and well cared for. Yes even the miracles have a sting in the tail for these folk.

Yet amidst all the anger and sorrow there were some heart-warming tales of individuals in the social and health care services who have done their job exceptionally well or gone way beyond the call of duty. In general they were felt to be the exception, but one grandmother spread her love a bit further, "Thank you Haringey Council. Thank you very much Government. Thank you Queen. I am British. Thank you very much". Even then I couldn't be sure whether this was more of a plea for help.

If their yesterdays and todays have been arid lands, many look to the future with a real sense of terror: "I can't work because of my son. We're not valued because of it. In fact I'm on the dung heap because of it. (Loud applause) We're frightened now of what's happening, but the future, with the budget cuts, is frankly terrifying".

So the audience came in desperation to get some help from people they hope have influence: "People here are so bruised and damaged by fighting that we're exhausted. We're asking you to fight for us now…..please....PLEASE!"

Before the MP candidates were give a chance to respond, Sue Hessell who runs a carers group within the Haringey Federation of Residents' Associations, asked the panel to also pick up on how they think the Haringey PCT has lost £750k of Government funds given to them to provide some relief to carers through respite care. Yup, you got it; they've lost £750,000.

Present on the panel were: Lynne Featherstone (Lib Dem, MP & Candidate for Hornsey & Wood Green), Karen Jennings (Labour, Candidate for Hornsey & Wood Green), Anne Gray (Green, Candidate for Tottenham), Pete McAskie (Green, Candidate for Hornsey & Wood Green), Richard Merrin (Conservative, Candidate for Hornsey & Wood Green), Sean Sullivan (Conservative, Candidate for Tottenham), Rohen Kapur (Independent, Candidate for Hornsey & Wood Green), Neville Watson (Independent, Candidate for Tottenham). [Neither David Schmitz nor David Lammy were present.]

All candidates started by thanking the audience for sharing the stories and spoke of how moved they felt. Most had useful ideas for solutions:

Lynne Featherstone said that she would work to unite social services and the NHS through local health boards. She also said that a Lib Dem administration in the Council would set up a powerful scrutiny committee to improve adult care in the borough.

Karen Jennings espoused establishing an advocacy service and echoed Featherstone's call for integrating health & social services.

Anne Gray focussed on a more grass roots approach, explaining that she thought the community could make significant progress by working together.

Richard Merrin had brought along a letter for all on the panel to sign asking the PCT and health minister to account for the missing £750,000. Picking up on the concerns of many in the audience who are confused about their entitlement to care and benefits, he also advocated simplifying the benefits system as it relates to this group.

Neville Watson called for an approach beyond party politics and with a little gentle badgering, by a show of hands, secured the agreement of all on the panel to collaborate across party lines to support carers.

It sounds like this event reflected rather better on the political process than the hustings Liz visited, but it was an emotionally tough morning for me. Type in the content of your page here.