Better at home - latest news
The Better at Home Campaign continues to attract support from professionals, organisations and families.
Since the launch of the Campaign in March 2009 the number of children in hospital has risen to over 220 and we are still hearing from families about their experiences of getting home from hospital.
How you can help
The experience of families is one of the most important aspects of this Campaign - we would love to hear from any parent or carer wishing to share their story, like that of four year old Poppy who was born with congenital heart disease and other complications.
Poppy’s complex health problems have meant that most of her short life has been spent living on a hospital ward, with only a few days here and there living at home with mum Olivia and so when WellChild Nurse Jane Alvey became involved with the family she was able to train Olivia about the feeding tube and other care procedures so that Poppy could be finally discharged home.
This is just one example of the many families in this situation - we would love to hear form other families about their experiences – both good and not so good. If you would like to share your story then please contact Helen Eke, Family Networks Co-ordinator on 0845 458 8171 or email campaign@wellchild.org.uk.
Pledge your support
The support of other voluntary organisations, family support groups, professionals, parents and carers is essential to the success of this Campaign. Please pledge your support - complete our online form here - and join supporters like the Association for Children's Palliiative Care (ACT).
"ACT wholeheartedly supports this important Campaign. There is a huge need for improved and expanded community children's nursing services to meet the needs of children with a range of complex health conditions including those with palliative care needs. Community children's nursing is the bedrock of children's palliative care and ACT looks forward to working in partnership with the Royal College of Nursing and WellChild to ensure that every child receives the vital care and support that they need at home."
updated April 2010
News from 2009
The Better at Home Campaign was officially launched at a parliamentary reception in Westminster on 10 March 2009. The Campaign has already received parliamentary support through an Early Day Motion but this reception was an important milestone in both raising the profile of the campaign and, at the same time, lobbying as many MPs as possible about the issues that it highlights.
The message that care for seriously ill children could be delivered at home rather than in hospital was heard loud and clear by MPs at a Parliamentary reception organised by the Royal College of Nursing (RCN) and WellChild and hosted by Tom Clarke MP, a very keen supporter of the Campaign.
Representatives of the RCN and WellChild including WellChild Nurses went to the House of Commons at Westminster together with parents and children to bring the issue of the provision of more community children’s nurses to the attention of MPs and other health decision-makers. The RCN and WellChild joined forces last year to launch the Better At Home campaign which is focused on improving care for children and young people with complex healthcare needs at home.
One of the things that Better At Home is calling for is the Government to invest in community children’s nurses to bridge the gap between hospital and community services for this vulnerable group of children. The reception on 10 March marked the official launch of the Campaign along with the interim report of the recent mapping exercise of children and young people still in hospital for three months and longer in England.
Two year-old Madison Kennedy from Accrington in Lancashire, who has spent her whole life in Liverpool’s Alder Hey Hospital, travelled down to London with her mother Danielle, grandmother younger brother Dylan and baby sister Macie to join the Campaign.
Danielle said having a young child in hospital long term is often simply not best for the family. She said: “You’re away from family and away from friends, it’s just not normal to wake up in a morning and your daughter’s not there – having to come to a ward instead of waking up and having her there in the house.”
In addition, teenager Toni Bewley (who has spent three years in hospital) and her parents spoke passionately about their experience. Ann Keen MP, Parliamentary Under Secretary for Health Services at the Department of Health, and Baroness Morgan of Drefelin, Parliamentary Under Secretary of State at the Department of Children Schools & Families, responded positively to the family’s moving speech and committed to working with the RCN and WellChild to resolve some of the issues raised.
Following the reception the support from MP’s has continued. Conservative MP Sir Nicholas Winterton who attended the reception, and his wife Lady Ann Winterton MP have both raised the issue of the lack of community children’s nurses at Prime Minister’s Question Time. More than 80 MPs originally put their weight behind an Early Day Motion placed in support of the campaign and we expect this support to grow as the campaign continues to gather momentum.
The RCN and WellChild have undertaken a mapping exercise in an attempt to find and record the number of children and young people in England who remain in hospital when they could be cared for at home. Key findings indicate:
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Young people are better cared for at home. Despite this, large numbers of children remain in hospital for months, even years, when they could be with their families.
Toni's view
Toni Bewley, aged 19, attended the Parliamentary reception with her family. Here she tells us, in her own words, about the day:
“At the beginning of March I got the chance to go to London to a parliamentary reception which was held to launch WellChild and RCN’s Better at Home campaign.
“Mum, dad and I travelled to London by car. All the equipment needed for me to stay overnight - spare ventilators, suction machines etc meant that we had to put the roof rack on the car. A little friend of mine Maddison from the same hospital unit as me also came along. As she was making the journey by train we took some of her overnight equipment in our car as well.
“The morning of our journey started off with excitement when the TV crew arrived to film Maddison, they continued to follow and film her and her family throughout the day, so now I know a TV star! We arrived in London after a four hour car journey and we then spent another hour negotiating the last mile through London to our hotel for our overnight stay.
“The hotel was in a great place directly opposite the London Eye, which looked brilliant when the coloured lights were on it after dark. On the way to the parliamentary reception we walked past Big Ben and the Houses of Parliament, the reception itself was being held in Portcullis house. On entering Portcullis house everyone is searched and the scary bit was that the policemen on the doors had machine guns held ready for action!
“The reception was in a large room which was packed full of people, including families of sick children, top people from children’s organisations and lots of MPs. I was really pleased when Chris Ruane the MP for my area Denbighshire, North Wales arrived in time to hear me and my family speak.
“When the time came for our speech I felt quite nervous but as my dad and then my mum spoke I relaxed; they talked about the lack of community nurses and staff and disjointed services that prevent us from getting home; I finished our speech by asking the people in the room to help me to get home.
“When the speeches were over, people chatted whilst they ate; Ann Keen spoke to me about the difficulties that I had been having getting home and apologised on behalf of the government, it was really nice of her to show such a personal interest. The reality is that if Elaine my Well Child nurse had not been involved with me I would not even be able to get home at the weekends.
“We returned to our hotel feeling that maybe the people that can make changes had listened to us and that the Well Child and the RCN’s Better at Home Campaign is going to make a difference.
“Two days after the trip to London I had my nineteenth birthday, the third birthday in succession that I have spent in hospital! Ann Keen sent me a birthday card, which showed me that she really is bothered about people.”
The following support has already been received:
“Aid for Children with Tracheostomies (ACT) fully supports WellChild’s Better at Home campaign. ACT has long been campaigning for community children’s nurses, as well as tracheostomy nurse specialists, and it has been pleased to see some progress in this area. However, it is obvious to us that there are many areas of the UK where there is little or no community children’s nursing available.”
Amanda Saunders, ACT Secretary
“Alder Hey Children’s Hospital believes that all children and young people should have access to a life that fulfils their potential. We know that some of our children who require intensive care packages have had to stay in hospital for months if not years mainly due to issues such as funding and housing. WellChild has helped us to change that position for a number of our children by funding a dedicated nurse for long-term ventilation, the difference this has made to our families has been fantastic, but this campaign needs to ensure this happens for all children in this position.”
Moya Sutton, Executive Nurse, Alder Hey
Celebrity GP support
The campaign has received the backing of high-profile doctor Sarah Jarvis – of BBC TV’s The One Show – who has written an open letter to newspaper editors asking for families to come forward with their stories and experiences. To read Dr Jarvis' letter, click here
