'Together we can make a difference'

Published 17 Mar 2011 09:30 0 Comments

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Berkshire hosted the first of the country's new health panels debating care for children with life-limiting illnesses, hosted by the Alexander Devine Children's Hospice Service on Friday, March 4, and The Chronicle was invited to join the conference which will report back to the Department of Health. Sally Stevens reports

Is iT too much to ask when the unthinkable happens? A trusted face, a familiar confident touch changing dressings and administering needles, homely and comfortable surroundings, the best expertise as well as reliable support at the exact moment you and your family need it as a child's life slips through your fingers.

Parents, experts and volunteers drew on their own experiences and those of children they have lost, as well as children coping with life-limiting illnesses, to answer the Government's challenge to help shape hospice care for youngsters.

Home Secretary and Maidenhead MP Theresa May joined 40 delegates, including Fiona Devine founder of the charity building Berkshire's first children's hospice in memory of her son Alexander, and Lucy Jones an Alexander's Nurse paid for by the charity to specialise in children's palliative care.

Mrs May said: "The Department of Health is getting a better understanding of what it is that parents would really value, where the gaps are in Berkshire and making sure we are not duplicating. We need to make the best use of every pound we spend. The Government doesn't have all the answers, this is about finding what people need."

The panel was chaired by Dr Peter Sebire, consultant paediatrician at Heatherwood and Wexham Park Hospitals Trust, who, alongside Mrs May and Sir Michael Parkinson, is a patron of the Alexander Devine Children's Hospice Service.

He said: "This is a unique opportunity because we can influence the direction of travel of children's hospice care. With 43 meetings across the country the aim is to shape changes for the future and I think it's the start of something that will gather a lot of momentum. They don't want us to come up with a

10-point action plan but if there are things we can recommend locally we should do."

Mrs Devine, from Windsor, told delegates: "My son Alexander and others like him are our greatest inspiration; we should embrace this discussion because together we can make a difference."

Alexander was diagnosed with a brain tumour in 2001 when he was four. He died aged eight and his mum and dad, Fiona and John, have since worked tirelessly to plug the gaps they found in the health care system, including expert palliative and respite care near to their home. Delegates agreed that there was a desperate need for the children's hospice in Berkshire and that parents, their ill children and families also wanted expert palliative care available in their homes and continuity of that care between home, hospital and hospice.

Ms Jones said: "Families have told me they would use a children's hospice if it was closer, that's the biggest comment I get."

The discussion explored ways of linking resources to offer parents a pathway of medical care, practical and emotional support, respite care, nursing and palliative expertise from the moment a child is diagnosed.

Mrs Devine said the experiences of parents who had first-hand knowledge of what was needed were essential in shaping the future of care for terminally ill children, such as her charity's ground-breaking initiative of Alexander's Nurses. These trained carers provide a link between parents, the sick child and medical teams wherever they are treated, as well as offering respite and medical care in the child's home.

Mrs May was surprised to hear that knowledge of the Alexander's Nurse at Wexham Park Hospital in Slough, with a second being recruited for Royal Berkshire Hospital, Reading, was limited among health professionals so parents were not automatically made aware of the service.

A Reading mother, whose son has cerebral palsy and other

complex medical needs, described the moment when he was diagnosed.

She said: "It's a big black hole. We were told to take him home and treat him as a normal baby but what would have been invaluable would have been a keyworker with knowledge of everything available because the services don't join up

"You are told what (help) you'll get - just to be asked would be nice.

"We need very flexible respite service so you can call someone you have built up trust with and say 'help!' otherwise you end up taking your child back into hospital.

"You don't always want respite care in your own home - you feel like you live in a goldfish bowl as it is. It would be lovely to have a local hospice service for children."

Dr Abigail Macleod, lead for paediatric palliative care at the Royal Berkshire Hospitals Trust, said: "Some children end up with fantastic health packages for them and their families and others end up with nothing. In my ideal world there would be a consultant in palliative care in every hospital."

Maddie Blackburn from Children's Hospices UK added: "Many children diagnosed with life-limiting illnesses are living perhaps to 30 and beyond who when they were born were expected to live only a short life."

Parents among the delegates stressed that families want a choice of care options to suit different stages of their child's illness or family circumstances. For instance, while healthy children can stay overnight with family or friends to give parents a break, few people are confident enough to care for a seriously ill child and cope with injections and complicated medication. They explained that many of their children were supported in their homes by hospital nurses in their own time.

Dr Macleod said she had spent the previous night with a sick child but added: "It's fine but it's not sustainable, that can't be done every time."

Julie Hughes, community nurse at the Royal Berkshire Hospital, said: "It's important to have choices but we need resources to offer those choices."

The mother of a toddler with cardiac problems told the conference: "We have been struggling to come to terms with losing our beautiful boy one day. Everyone asks 'how are you?' and I say 'I'm okay'. But I'm not okay. The only thing we have is Lucy who has a huge workload."

Dr Andrew Boon, a consultant at the Royal Berks, said: "It's been a remarkably constructive discussion. I really like the idea of having a keyworker and a central point of information through a website.

"We have to persuade the commissioners of services (GPs) of the need for children's palliative care. I've been a paediatrician for nearly 40 years…but I really don't feel I have specialised knowledge of life-limited care. We should be better informed and we need to feel empowered to deal with this issue."

At the end of the two-hour conference at Oakley Court Hotel, near Windsor, Dr Sebire said: "We can't let this be a one-off. There are a lot of things we can do locally to help children and their families."

Cllr Asghar Majeed deputy mayor of the Royal Borough of Windsor and Maidenhead, asked for opinions on bereavement counselling after a child has died.

Dr Macleod said: "It's a huge under-resourced issue and we need counselling for the whole family together."

Mrs May, a supporter of Twyford-based Daisy's Dream, a charity that supports bereaved children, said: "Some people need support

immediately and then think they are okay, but it may be later on birthdays for instance, when help is needed as well."

Delegates from hospices and parents called for counselling to be available in the community because families often do not want to return to the hospice where they lov ed one was cared for.

The Reading mum said: "It is nice to have a voice and be listened to and if the people here commit to taking action it will be very powerful indeed."

l To find out more about the Alexander Devine Children's Hospice Service visit www.alexanderdevine.org

This article appeared in Reading Chronicle 10 Mar 11

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