Baby death charity in cry for help

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A VITAL charity which helps hundreds of heartbroken parents through the agony of a baby’s death is facing a fresh cash crisis.

The Stillbirth and Neonatal Death Society (Sands) Lothians - which has received the public support of Gordon Brown and his wife Sarah - is having to slash its services to one day a week.

The organisation was saved from closure earlier this month when its bank balance dipped below 1000 following an 11th-hour appeal for private donations.

But politicians today demanded that Sands be given government funding to ensure it survives in the long term.

Neither NHS Lothian, Edinburgh City Council nor the Scottish Executive will offer Sands ongoing funding to meet the 60,000 bill it needs to operate annually. Four attempts to obtain Lottery cash have also ended in failure, meaning the group survives solely on donations and fundraising events.

Sands deputy manager Jennifer Rudge admitted the regular rejections had left backers "very frustrated" as the group prepares to celebrate its 25th anniversary.

"We never seem to fit anybody’s criteria," she said. "We have an annual memorial service each December but we weren’t sure until recently if it was even going to happen this year."

Sands has about 600 families from across the Lothians on its books. About 100 babies are stillborn or die soon after birth in the area each year. Ms Rudge, who became involved with Sands after losing twins in 1987, said: "We have approached the Lottery on four occasions and been rejected each time. They said we didn’t meet their criteria and suggested we try again.

"We have had a few one-off grants [from trusts] - and a few small grants from NHS Lothian, which were appreciated. But we need core funding. Our basic services are jeopardised but there’s so much more we could be doing. We know the need is there.

"We get a lot of referrals from social work and health visitors in the community. If we weren’t there to provide these services, it would put additional strain on [them]."

Tory health spokesman David Davidson today said it was "staggering" that Sands had to face an annual cash crisis. "If a charity deals with up to 500 families each year, does it not indicate a need for this service to be provided on a professional basis by the health service?

"If charities providing vital services are to survive, ministers must intervene."

SNP shadow health minister Shona Robison added: "Given the level of money given to the NHS, it’s a nonsense that a small amount of funding cannot be found for such an important service. I think the NHS has a duty to support voluntary services which save them money. The Executive has a role here as well to make sure there’s adequate funding. NHS Lothian and the city council have to think again to work out some sort of funding package for this vital project."

Tom Ponton, Lib Dem health and social work spokesman on the city council, added:

"When you look at the support prisoners coming out of prison get and then look at Sands - which is much needed and appreciated by grieving parents - there are clearly injustices. The local authority’s new department of health and social care is going to be joint-funded between the council and health board so I think Sands should qualify for some sort of financial backing."

The charity’s four part-time staff - who in recent years have worked for up to five days a week - are now only at their offices in the Craiglockhart Sports Centre on Mondays, although staff volunteer their time another day each week. As well as one-on-one counselling sessions, Sands provides a befriending scheme - which allows staff who have also suffered the pain of loss to informally meet with clients - and a 24-hour phone line.

Sands previously operated a special "family room" as a private place for families to spend their last moments with their babies at the old ERI but NHS chiefs axed the programme after one year at the hospital’s new Little France site because of a lack of space.

Ms Rudge added: "Going through another pregnancy after the death of a baby is a very anxious time so we provide a next pregnancy support service as well as a service for parents bereaved many years ago - who sometimes don’t know where their babies are buried.

"Some parents have spoken to our counsellor for the first time 30 or 40 years after the death of a baby. People often ring and say: ‘I’m having a really terrible day, can I drop in and have a cup of tea?’ They just want to speak to someone who understands. With us not being in the office as much, that isn’t happening."

Scottish Equitable has adopted Sands as a charity and has made it the focus of staff fundraising activities so a major cash injection is expected early next year.

Last November, Chancellor Gordon Brown and wife Sarah donated a bottle of House of Commons whisky to an auction for the charity. The couple lost their first child, Jennifer Jane, at just ten days old, after she suffered a brain haemorrhage at the city’s Simpson Memorial Maternity Pavilion. Two years ago, Mrs Brown officially opened the charity’s offices after "realising the good work Sands does" for bereaved families.

In March 2003, news that a Lottery application seeking 300,000 in funding over three years had been rejected prompted Sands to open a charity shop in South Clerk Street in a bid to help safeguard the charity’s future.

Two years earlier, Sands was unable to hold its annual memorial service due to funding problems but later received a 11,500 hand-out from a group of Midlothian Masons.

An appeal through the Evening News in 2000 raised about 5000 after the charity was turned down for grants. In October 1998, the charity also warned it was only two months away from closure before generous private donors came to the rescue.

And the previous August another cash crisis was averted when Friendship in Action - a charity fronted by former Kwik-Fit boss Sir Tom Farmer’s brother Des - gave 5000.

The Executive this year gave a total of 8000 to Sands UK - the charity’s national umbrella organisation - but suggested that funding for the city-based group was the responsibility of NHS Lothian.

A spokeswoman added: "If Sands Lothians requires further funding at a local level then they may apply to their NHS board."

NHS Lothian officials stressed they had no obligation to provide funding to charities but acknowledged that many such groups were providing high-quality services to the public.

John Matheson, NHS Lothian’s director of finance, said: "We fund a number of voluntary and charitable organisations that help us achieve our healthcare aims. Funding for these groups is assessed through a process which deals with competing priorities. If Sands have any specific funding issues, I would encourage them to get in touch."

A city council spokesman was unable to comment on why the local authority did not provide core funding for Sands.

'I shut myself away from the world'

EDINBURGH-BORN best-selling author Isla Dewar knows from personal experience just how traumatic stillbirth is.

She suffered five miscarriages and a stillbirth before she eventually had her two sons, Nick and Adam.

Her loss in the 1970s was made even more distressing by the lack of understanding prevalent amongst hospital staff regarding stillbirths at that time.

Now in her 50s, she says: "What happened to me was horrible and would not happen now. I went into labour early. There was something wrong with the baby’s kidneys and I had been ill as well.

"My husband, Bob, drove me to the hospital and we arrived at about 2am after driving for miles. It was winter and it was snowing. As I arrived I was told that the baby would not survive. They wouldn’t let my husband in the room with me, I don’t know why, so I was left all alone for several hours. I was really young, in my 20s, and in a lot of pain. It was a breach birth and when I looked up [afterwards] the room had filled with medical students. They had not told me, they had just silently come in.

"They [the doctors] said this is an unusual thing and the students need to see it, which I can understand now, but you would think they might have said.

"Then they took the baby away without me seeing it and left me all on my own again. When the next shift came they took me to the maternity ward. All the women around me had babies and every four hours they kept bringing me a bottle to feed my baby.

"Every time I had to say: ‘No, no, I don’t have one’. It was a hellish time. When I went home the district nurses were absolutely wonderful but I felt terribly depressed for months. I shut myself away from the world with my husband.

"I remember one of the hospital doctors said to me: ‘You can try again in three or four months, think of the fun you’ll have.’

"It was an incredibly insensitive thing to say, I don’t think he realised.

"The attitude then was that there was nothing really wrong with you and nothing they could do. I think medical staff now are a lot more sympathetic."

She was not aware of any groups like Sands at that time, but she says that the support that they offer women is invaluable.

"What women need is help, understanding and somebody to talk to. I would have gone to a group if I had known about one. I would do anything I could to help these kinds of groups [like Sands]."

Family able to move forward

THE first time Anne Batty spoke to Sands was just a few months after her son’s death. The last time was on Sunday.

"It was the anniversary of my son’s death. You do relive your experience. I relived every minute of being in the neo-natal unit.

"It’s so comforting to know there is someone on the end of a phone line who I can speak to when I need to."

The 38-year-old was 32 weeks’ pregnant when she went through a normal birth in the ERI at Little France two years ago.

"But after ten days, my son developed an infection and, despite having a couple of operations, we were basically told by the doctors they couldn’t do anything to save him. The infection had destroyed his digestive system. We had to switch off the life-support system."

Her emotions were left in turmoil - not least because Owen was a twin, and Mrs Batty’s other baby, Freya, was alive and well. "I was really lost. I didn’t know how to feel. I didn’t know whether to feel happy for the baby I still had or grief for the baby I had lost. I ricocheted from joy to extreme devastation."

It was two months before Mrs Batty, an investment company manager from Saughtonhall, felt able to tackle her grief.

"During January, I realised I kind of still felt angry - why was the world still going on as normal?

"I had a leaflet from Sands but I couldn’t pluck up the courage to ring anyone. I thought if I spoke to someone I would dissolve into a tearful wreck."

Eventually she e-mailed and the warmth of the reply gave her the courage to attend a one-to-one session, and then the group’s monthly meeting.

"The strength I got from meeting some of the people there was immense. Friends and people at work tried and most were excellent, but it was very, very hard for them to understand.

"I found I got support from just being able to feel normal, that it was OK to feel these emotions I was feeling. It gave me the strength to see that there was life afterwards."

The support from the group also helped when Mrs Batty and her husband Ian, 37, an IT technical support manager, decided to try for another baby. Their son Calvin is now nine months old. "I conceived quite quickly, but I was nervous something would go wrong. Despite the fact I kept telling myself that nature couldn’t be that cruel, you don’t have any guarantees. I attended the pregnancy support groups at Sands. It was great being able to express these fears to a midwife."

The group also supports fathers - many of whom feel they need to put a brave face on.

"My husband tends to bottle it up. I think he felt he had to be strong for me.

"After a while that brave face started to slip and I think he found it hugely helpful that he could talk and be open about it."