WellChild - Helping sick children and their families across the UK

Latest News

There’s always something going on in the world of WellChild. Here’s where we tell you about the latest developments – hot off the press. Whether it’s fundraising triumphs, scoops on our work with children and young people or news on any of our many events, this is where to find the latest information.

Families take the Harry Potter Tour with patron Prince Harry (May 2013)

Making the most of your medicines (May 2013)

Join in the Zumba fun for WellChild! (May 2013)

Thanks to Krowmark for keeping WellChild staff warm! (May 2013)

Corrie star launches Scumrun for WellChild (May 2013)

Opinions needed for gastronomy care survey (April 2013)

10th annual Energy Dinner a great success (April 2013)

Become a member of our new Parent Group (April 2013)

First ever WellChild Professor of Community Children's Nursing (April 2013)

Gearing up for Scumrun! (Mar 2013)

Caroline Flack hosts Helping Hands Dinner at the Savoy (Mar 2013)

WellChild welcomes government response (Feb 2013)

Well done to top seller Seb! (Feb 2013)

Could your company lend a Helping Hand? (Jan 2013)

A warm welcome for Tracy, WellChild's new Children's Nurse in Manchester (Dec 2012)

Charities put their trust in teenager on Takeover Day (Nov 2012)

WellChild welcomes the launch of the 'Turning Tide' report (Nov 2012)

Super skydive for WellChild (Nov 2012)

A warm welcome for London WellChild Nurse Sue (Nov 2012)

Sick kids to benefit from Marex Spectron charity day (Nov 2012)

Dancestars do Strictly for WellChild (Nov 2012)

Only a third of parents of premature babies are aware of bronchiolitis (Nov 2012)

Who Cares? Conference highly successful (Oct 2012)

Petticoat Fair a great success! (Oct 2012)

Children at risk of eating disorders have higher IQ and better working memory (Oct 2012)

Collection thanks to RAG Karnival (Oct 2012)

Scumrun announce WellChild is their charity for 2013 (Sept 2012)

Busy time for Roadtrip fundraisers (Sept 2012)

Shamim's super singing for WellChild (Sept 2012)

Duncan and Ed support WellChild at BGC day (Sept 2012)

Polo Princes aid WellChild (Aug 2012)

New WellChild Nurse Jodie is welcomed to her role in Southampton (Aug 2012)

Families take the Harry Potter Tour with patron Prince Harry

Some of our WellChild families were treated to a magical day out last month when they toured the Warner Bros studios in which the Harry Potter series was filmed.

As part of the Charities Forum, WellChild were kindly offered the tickets by WellChild’s patron, Prince Harry who attended with the Duke and Duchess of Cambridge and the creator of Harry Potter, J K Rowling.

Those invited included a number of families WellChild has directly helped via the WellChild Nurses and Helping Hands projects, along with members of our review panels and those on our private Families group on Facebook. All were treated to a marvellous day surrounded by the mystical memorabilia of the wonderful films and the incredible sets of Hogwarts School, Diagon Alley and Gringotts Wizarding Bank.

WellChild are extremely grateful to the Charities Forum who gave us the opportunity to share this once in a lifetime experience with our families, many of whom couldn’t wait to let us know how much they enjoyed the day.

‘We have just finished the tour and it was sooo good.. Thank you for all your hard work arranging a day to remember,’ Family of children with Wolfram Syndrome.

‘What a fantastic day!! Thank you so much for orchestrating. Boys had a brilliant time,’ Family with a child cared for by a WellChild Children's Nurse.

Making the most of your medicines

WellChild is supporting calls for more tailored, personal advice to be provided to patients to address a lack of knowledge about medicines. It follows new research from the Royal Pharmaceutical Society (RPS) which reveals:

Only 49% of those questioned in the survey said they were usually aware of the side-effects of a medicine before they started taking it
Less than half (44%) said they would check how a medicine might react with their other prescriptions
Just 42% of people always read the patient information leaflet included in the pack
Only 10% would check for interactions between a medicine and any herbal remedy they are taking

This demonstrates a clear need for patients to understand their medicines better to improve their health and reduce medicines waste.

£300 million of medicines are wasted every year in the UK. At least half of this is recoverable as much of the time it comes down to people not taking their medicines as recommended (between 30-50% do not take their medication as prescribed). It is vital patients understand what they are taking and how to take what’s being prescribed to them correctly as failure to do so could lead to serious illness. It can also have a serious impact on NHS finances and increase hospital admissions.

In collaboration with WellChild the RPS has now published a list of questions, which people can ask when they are being prescribed a medicine. More information is available here.

Join in the Zumba fun for WellChild!

Mandy Bains of Cheltenham will be raising money for sick children in the UK when she organises her fourth annual Zumbathon for WellChild on 30th June 2013. Previous years have attracted around 700 people who danced for up to three hours, led by Mandy and her team of top-class instructors.

Mandy who hosts Zumba classes across the county is hoping to raise £10,000 for WellChild with the Zumbathon at The Park Campus, University of Gloucestershire, Cheltenham. Her effort will allow WellChild to carry on its work for chronically sick children throughout the UK.

Mandy is looking forward to the event and working hard to make sure it is even bigger and better than previous years and she is busy getting support from as many people in the area as possible.

“There are hundreds of thousands of children in the UK living with long-standing illness or disability. By dancing in aid of WellChild I hope we can help them in their aim of improving the lives of as many sick children as possible,” Mandy said.

WellChild Chief Executive Colin Dyer is delighted that Mandy has decided to support WellChild.

“It’s great that Mandy and hundreds of people in the county are prepared to help us in this way. For many of the kids we support just getting through the day is a huge challenge and they have an Everest to climb in trying to live the kind of normal life we all take for granted. On their behalf I thank Mandy and her team for all the hard work they have put in,” he said.

Whether you’re a seasoned Zumba dancer or fancy trying out the Latin-based dancing craze, come and take part in the fourth annual Zumbathon in Cheltenham.

You and hundreds of others will be shimmying and shaking for over three hours, led by Mandy and her team of top-class instructors.

Join in the fun on Sunday 30th June at The Park Campus, University of Gloucestershire, Cheltenham from 2:00pm. Tickets are just £15 and all proceeds will come directly to WellChild. To purchase tickets please contact Mandy on info@zumbawithmandy.co.uk or phone 07790 545570.

Thanks to Krowmark for keeping WellChild staff warm!

WellChild would like to thank Krowmark Workwear for its support for the charity by providing WellChild staff with branded t-shirts, waterproof jackets and hoody jumpers.

The branded clothing has been donated to the charity by Mark Ponsford, MD of Krowmark Workwear who has been a strong supporter of WellChild. Mr Ponsford has taken part in a number of challenge events such as the London Triathlon and London Marathon to raise money for WellChild’s work with seriously ill children and their families.

The clothing will be worn by WellChild staff at events across the UK including our Helping Hands projects and at fundraising events such as the marathon.

WellChild’s Challenge Events manager Steve Williams said: “We would like to thank Krowmark very much for this donation, their continued support has been fantastic.”

Corrie star launches Scumrun for WellChild

On Thursday 2nd May actress Catherine Tyldesley who plays feisty Eva Price in Coronation Street launched the 2013 Scumrun car challenge from the Ramada Dover.

Competitors in this hugely popular and fun driving challenge set off from Dover in decorated bangers and fancy dress to travel across Europe to raise money for WellChild's work for sick children in the UK. See pictures from the launch here.

Scumrun, now in its eighth year, is the biggest and original charity banger driving event featuring cars worth no more than £500 which competitors have modified in imaginative and unusual ways. Between May 2nd and May 6th more than 100 competitors from all over the UK will make the journey across Europe, taking on new challenges in mystery locations each day.

Catherine enjoyed meeting participants as they competed for the coveted ‘Spirit of the Scumrun’ prize, awarded to the team combining the best fancy dress, most inventive car modifications and best sense of team work. Among a host of other awards will be a prize awarded to the team raising the most for WellChild.

WellChild Chief Executive Colin Dyer is delighted that the organisers and participants in the Scumrun have decided to support WellChild. He said: “There are hundreds of thousands of children in the UK living with long-standing illness or disability. For many of the children and young people WellChild supports just getting through the day is a huge challenge and they have an Everest to climb in trying to live the kind of normal life we all take for granted.

"On their behalf I thank everyone involved in this year’s Scumrun for all their hard work. It is sure to be a brilliant, fun event and we wish all those taking part a fantastic and successful drive.”

Scumrun organiser Ed White said: “Our prime objective has always been to raise much-needed money for national children’s charities and so we’re really hoping this year’s Scumrun will make a tremendous difference to the lives of the children supported by WellChild.”

Opinions needed for gastronomy care survey

WellChild have funded an exciting new project with the Centre for Children and Families Applied Research (CCFAR), Coventry University. We would like to invite you to contribute to the project by telling us your views in a brief online survey.

The project aims to provide new online training for professional carers to help them to improve their skills and confidence when working with families, children and young people with gastrostomy care needs. As part of this project we are giving families, children and young people the opportunity to tell us what they think of the care they are currently receiving.

Your valuable comments will help us to identify how professional carers can better meet your needs. Please click on the link below if you would like to complete the survey and contribute your thoughts.

If you would like more information please contact Reena Patel at ab0372@coventry.ac.uk or Tel: 02476795814. Thank you in advance for your support towards this important project.

To see the survey click here.

10th annual Energy Dinner a great success

In a setting befitting a futuristic film, members of London's energy community gathered on April 25th for the annual Platts-sponsored Energy Dinner in support of WellChild. The dinner raised approximately £130,000 for WellChild's work, with the final total still to come.

You can see pictures from the evening here.

"We'd like to thank the energy industry for coming out in force last night and across the years to the Energy Dinner in support of this important charity," said Sarah Cottle, editorial director of power for Europe and Asia at Platts, the energy information arm of The McGraw-Hill Companies and Dinner sponsor since 2004.

"We're proud to announce that monies raised during the event's first decade total nearly £1.5 million, providing much needed support to WellChild and the children and families it helps."

Each year the aim is to make the dinner an uplifting, out-of-this world experience, and this year's theme transported guests to future. The Intercontinental Park Lane ballroom was cloaked in black and white, with bright stars and green lasers adding to the evening's mystique. Greeters dressed as Jedi knights welcomed the approximately 500 guests, including patrons from such companies as Barclays Capital, Centrica, Chicago Mercantile Exchange, Ernst & Young, HETCO, Merrill Lynch, Morgan Stanley and RWE, among others.

All proceeds from the Energy Dinner will support WellChild's wide-ranging initiatives, including: research; its specialist WellChild Nursing teams that care for children with complex care needs in and out of hospital; and the WellChild Helping Hands endeavor, a program of volunteers that tackles home re-design development projects necessary to facilitate any special needs of critically-ill children.

"We are delighted that WellChild is again the beneficiary charity of the Energy Dinner. The fundraising at the event over the years has been tremendous and continues to give us an amazing boost in our work to help and support seriously ill children across the U.K. We would like to thank everyone involved in the Energy Dinner," said WellChild Chief Executive Colin Dyer.

Become a member of our new Parent Group

With increasing gaps in care for seriously ill children and young people in the UK, many thousands of families depend on WellChild’s support. As a parent of a child or young person with a long term health condition or complex care needs, you are not only the expert in the issues that you are facing, but also in the support and information that you need. This is why we need you!

As a member of our new parent group you will not only have the opportunity to discuss the work that we are doing, but also influence the direction of the work we are yet to do. We want to hear about the main issues that are affecting families with sick children so that we can represent your views to key decision makers. You will also be helping to ensure that the information we produce both for, and on behalf, of our families is useful and written in the right way.

If you are a parent and would be interested in becoming a member, or you would like to find out more, please get in touch with Hannah: hannahbemand@wellchild.org.uk or tel. 01242 548760.

First ever WellChild Professor of Community Children's Nursing

WellChild is delighted to announce the appointment of Mark Whiting as the first ever WellChild Professor of Community Children’s Nursing at the University of Hertfordshire. This innovative and exciting appointment will establish one of only a handful of clinical nursing professorships within the United Kingdom and will be undertaken in combination with Mark’s substantive post as Consultant Nurse for Children’s Community and Specialist Nursing with Hertfordshire Community NHS Trust.

Mark is already an established member of WellChild’s Nursing Advisory Panel, and has supported the work of the charity over a number of years. His appointment will support the development within the University of Hertfordshire of a research focus upon the experience of children and young people with disabilities and complex, long term health needs.

Mark will establish a programme of research working alongside the highly valued nationwide team of WellChild Children’s Nurses who support children to leave hospital and return home to their families with the care and treatment they need.

A formal launch of the WellChild Professor of Community Children’s Nursing post will take place on International Nurses Day on Friday 10th May when Mark will be giving an inaugural professorial lecture at the Lindop building at the University of Hertfordshire.

Linda Partridge, Head of Programmes for WellChild commented: “Mark is highly respected in the field of children’s community nursing and this appointment will aid him in continuing to raise the profile of seriously ill children in the community and addressing their needs at a local, regional and national level.”

WellChild Professor of Community Nursing, Mark Whiting said: “I am absolutely thrilled to be taking on this new challenge. It is almost thirty years now since I took up my first appointment as a Children’s Community Nurse in North West London. Throughout that time my greatest frustration has been the lack of research to demonstrate the real difference that children’s community nurses can make to the lives of children, young people and their families.

"I hope that his appointment will allow me to begin to address that research-deficit. This really is a once-in-a-lifetime opportunity and I am very grateful to both WellChild and the University of Hertfordshire for their support in this venture.

"The fact that I will continue to work four days a week within the Children’s Community and Specialist Nursing Team in Hertfordshire Community Trust will help to enhance the credibility and robustness of the research programme by ensuring that it is fully grounded in clinical practice.”

Jackie Kelly, Head of Department for Nursing (Children's, Learning Disability and Mental Health) and Social Work, at the University of Hertfordshire commented: “We are delighted to announce the appointment of Mark Whiting as the WellChild Professor of Community Children's Nursing at the University of Hertfordshire. This appointment gives us a new and exciting opportunity to work with WellChild and further extend our established partnerships with Mark and with Hertfordshire Community Trust. We welcome the potential opportunities that this collaborative initiative will enable in addressing a wider audience and ultimately promoting greater emphasis and broader awareness of issues for seriously ill children and their families.”

Hertfordshire Community NHS Trust Children’s Services General Manager Marion Dunstone said: “We are excited to be working in partnership with the University and WellChild to improve research in children’s community nursing. Mark’s appointment will also allow our Trust to continue the development of its children’s services research programme.”

The post which is jointly funded by University of Hertfordshire and WellChild has been agreed for an initial three year period.

Gearing up for Scumrun!

Preparations for this year's brilliant Scumrun driving event are now well underway. WellChild is delighted to have been chosen as the beneficiary charity for the Scumrun 2013. This hugely popular event is a drive around Europe for cars costing no more than £500 and each year it raises lots of money for a children's charity. in 2013 the chosen charity is WellChild.

Lots of teams are gearing up for the event and fundraising ready for the big day. Among those people WellChild would like to thank are Creed Foodservice who have donated food and refreshments for goody bags for the participants in this year's Scumrun. And Experience Days who have made a £50 donation to the team Crash Test Brummies.

Good luck to all who are getting ready to take part in this year's event which takes place from May 2 to May 6. Read more about Scumrun here.

Caroline Flack hosts Helping Hands Dinner at the Savoy

On Thursday March 7th, TV presenter, Caroline Flack will be hosting the exclusive Helping Hands Dinner at the iconic Savoy Hotel in aid of national children’s charity WellChild.

The glamorous, black-tie event sponsored by long-term WellChild supporter GlaxoSmithKline, will feature a champagne reception, dinner and top class entertainment from comedian Tim Vine, chart-topping indie band The Noisettes and renowned operatic group Amore.

With all tickets sold out well in advance, the star-studded event will be attended by many of WellChild’s celebrity ambassadors and is set to raise more than £150,000 to support the charity’s work with sick children and young people across the UK.

WellChild, which has Prince Harry as its Patron, funds a team of WellChild Children’s Nurses who work to ensure that seriously ill children and young people can be cared for at home rather than in hospital wherever possible. The £150,000 target at the Helping Hands Dinner matches the cost of funding a new WellChild Children’s Nurse for life.

WellChild also funds a number of other projects designed to provide support to families caring for children and young people with long-term or complex care needs. This includes the charity’s unique Helping Hands scheme which enlists volunteer support from companies and organisations of all kinds across the UK to tackle life-transforming home and garden development projects, providing practical support for families with seriously ill children and young people.

WellChild Chief Executive Colin Dyer said: “We are really looking forward to our first ever Helping Hands Dinner and we are incredibly grateful to all of our sponsors, celebrity supporters and everyone who has helped us get this event off the ground. Our work for children and young people across the UK is growing all the time, and it is fantastic to see so many people throwing their support behind that crucial work by supporting what we hope will be the first of many events of this kind. We have reached many thousands of children and families and we are fiercely determined to reach many thousands more.”

WellChild welcomes government response

WellChild welcomes the response from the Government on February 19th to the recommendations of the Children and Young People’s Health Outcomes Forum originally published in July last year. This Forum brought together some of the key decision makers and professionals from across the wider children’s health environment along with representatives from children’s charities and parents, and set out clearly the need for system wide changes, desperately needed to improve the health outcomes for all children and young people.

From WellChild’s perspective we are particularly pleased that the response included a determination to provide better care for children and young people with long term medical conditions, along with better co-ordination and integration of services tailored around individual needs. Last week Linda Partridge, Director of Programmes at WellChild, attended a prelaunch event at Evelina Children’s Hospital in London at which Dr Dan Poulter, Parliamentary Under Secretary of State for Health, signed the Government’s pledge to work in partnership both locally and nationally with children, young people and their families to ensure that there is change at every level of the system.

Looking ahead, WellChild is delighted to have been invited by Dr Poulter to be part of a new Forum, which will bring together representatives and leading experts in children’s health to oversee and monitor progress as this work moves into the next phase.

Linda Partridge said: “There have been many reports over the years which have highlighted the need for change and, in some areas, there have been improvements. However the original work of the Forum has clearly said there is a need for wider change now. This is to ensure that all families benefit from system wide changes. Families need the right services at the right time and we must ensure that this happens.

“I am also pleased that the urgent need for more timely diagnosis and accurate data has been identified. For too long we have struggled with not knowing who and where these children are and this must change. I am honoured that WellChild is going to be part of this important and exciting work and look forward to making sure that children, young people and their families remain firmly at the heart of this Forum.”

Well done to top seller Seb!

Well done to Seb Search, a pupil at Balcarras school in Cheltenham who has won a fundraising competition to support WellChild.

When Jess Akino from WellChild visited the school recently to talk about what we do, she set the students a challenge to sell as many Spot the Dog badges as they could in 12 days to support our work with seriously ill children and their families. Seb rose to the challenge, selling all his box of badges and raising £54.33 for WellChild. He has won two tickets to the Screening rooms in Cheltenham.

Jess said: “Very well done to Seb for working so hard to sell his Spot the Dog badges. The money raised by him and his fellow students will be a great help to WellChild in our work helping seriously ill young people up and down the UK.”

Could your company lend a Helping Hand?

The Helping Hands volunteer team with Thomas 2012 was a brilliant year for the WellChild Helping Hands project! During the 12 month period we managed to complete 31 projects which brought a fantastic improvement in the quality of life for sick children and their families across the UK. We could not have done that without the help of some fantastic corporate volunteers.

In the Helping Hands project we take a team of volunteers into the family home of a sick child for one or two days to carry out improvements such as bedroom and garden makeovers. Find out more about Helping Hands here.

With the addition of an Assistant Project Manger to our team we hope to do many more Helping Hands projects in 2013 and support more children and young people who are living with serious illness or complex care needs. That is why we need your help to find more companies who are willing to lend a Helping Hand.

We are looking for community focused companies to help us with our latest list of projects covering all areas of the UK. Please take a look at our list of projects and see if your company could step forward to provide the volunteer workforce and resources to make a real difference to children and families on one or more of these projects. See the full list of projects here.

A warm welcome for Tracy, WellChild's new Children's Nurse in Manchester

WellChild Nurse Tracy with one of the children she supports WellChild, has funded a new post at the Royal Manchester Children’s Hospital, to provide a WellChild Children’s Nurse. This week is the official launch of the post of WellChild Children’s Nurse, Tracy Brooks, who will be helping seriously ill children across the region whose long term and complex health problems means they need medical support to breathe. Tracy will provide support and training to these families and coordinate everything required to enable these children to return home from hospital with the care and treatment they need.

Tracy will work closely with colleagues at Royal Manchester Children’s Hospital and in the community to provide support with long term ventilation every step of the way home. As well as arranging and coordinating the care needed for these children to live at home, the WellChild Children’s Nurse will provide emotional and practical support for the whole family.

Immediately prior to this post Tracy, who has experience of working with children in hospital and community settings, worked in a Children’s Complex Needs Team. She therefore brings considerable expertise and a comprehensive understanding of the needs and challenges faced when transferring a child from hospital into the community and a sound knowledge of the ongoing issues facing children who are long-term ventilated and their families.

Tracy said: “Currently children in this area who are long-term ventilated do not always receive consistent services. I hope that in my role I can ensure that the journey for the whole family is a seamless process from diagnosis through discharge home to receiving care in the community.”

In those parts of the UK where there is still no WellChild Children’s Nurse to provide a dedicated link between all the health professionals and different services required to care for a child with complex health needs, children can remain in hospital for months, even years. This is despite evidence that it is better for their emotional and physical wellbeing to be at home with their families. It can also be more cost efficient to care for a child at home than in hospital. The WellChild Nurses’ programme was established to address this clear gap in the provision of care and support for sick children with long-term serious illness and complex conditions.

Children who have serious illnesses and complex conditions will benefit from the service provided by the new WellChild Children’s Nurse, such as two-year-old Kainaat from Rochdale who has remained an inpatient since her birth. Kainaat has had a heart transplant and requires continuous ventilation to assist her breathing, so it is important that all staff and services involved in caring for her at home and in hospital are effectively coordinated. With Tracy’s help the family are hoping to spend some time at home together this Christmas with Kainaat being fully discharged in the new year, 2013.

WellChild’s pilot Children’s Nurse programme began in 2006, and the success of that pilot has resulted in the creation of permanent posts in Ayrshire and Arran, Birmingham, Bristol, Cambridge, Cardiff, Cumbria, East Sussex, Hywel Dda in Wales, Liverpool, London, Oxford, Southampton and Yorkshire. Two new posts will be added in 2013.

WellChild continues to fundraise to add to its team so that long-term sick children across the United Kingdom will benefit from these services. WellChild’s programme ensures that each new nurse appointment has a long-lasting impact. A WellChild Children’s Nurse post costs approximately £55,000 a year, and the charity provides funding for the first three years. The relevant local health service providers should then continue that post’s funding and management are asked to guarantee an on-going legacy of care.

Linda Partridge, WellChild’s Director of Programmes, said: “We have worked to make sure that the essential service now provided by WellChild Children’s Nurses in regions of the UK have a long-reaching impact. Our target is for every seriously ill child or young person to have access to a WellChild Children’s Nurse, and I am delighted that we have now been able to extend that support into this part of the North West.”

Many children and young people in the UK have spent the majority of their lives sleeping in hospitals rather than at home and are spending their young lives away from parents and other family members even for key events such as birthdays and Christmas because of delays in organising the specialist care they need at home. WellChild is actively exploring the issues around improving care for these children and young people with complex health needs to ensure they can return home as quickly as possible and remain there safely.

Ian Crabtree, Head of Nursing – Royal Manchester Children’s Hospital said: “I am delighted to be able to be working together with WellChild in supporting this new role. This will make a very big difference to children and families and will enhance the patient journey and patient experience for them. Tracy also brings with her a wealth of experience in supporting these families in the community and is an asset to the wider multi-disciplinary team”.

Denise Jonas, Modern Matron – Complex and Tertiary Medicine at the Royal Manchester Children’s said: “The appointment of Tracy Brooks into the role of WellChild Long Term Ventilated Nurse at Royal Manchester Children’s Hospital (RMCH) will ensure strong support and advocacy to the families of children with long term ventilation needs. Tracy will provide a much needed professional association between hospital and home and work in partnership with the family to ensure timely and effective discharge, resolve any issues and prevent hospital re-admission. By investing in this role now the RMCH will benefit from a reduction of in-patient costs, improved quality of care and also help these disadvantaged children succeed and experience as full a family life as possible”

Charities put their trust in teenager on Takeover Day

Cheltenham-based national children’s charity WellChild is working with local charity Gloucestershire Young Carers to give 13-year-old Scott Lewis the opportunity to become CEO for the day as part of national Children and Young Person’s Takeover Day.

WellChild, the national charity for sick children, will be handing over the running of the organisation to Scott this Friday (Nov 23rd). The charity hopes to capture Scott’s experience of caring for two brothers with cerebral palsy as it prepares to launch its new strategy which is focused on the involvement and participation of young people and families.

As a young carer Scott is supported locally by the charity Gloucestershire Young Carers which supports more than 765 young carers in the county who are affected by having someone in their family who is disabled, ill, experiencing mental ill health or who is affected by substance misuse.

Taking the helm at WellChild for the day will allow Scott to chair meetings and be involved in decision-making, particularly surrounding WellChild’s communication with children, young people and families across the country.

WellChild Chief Executive Colin Dyer said: “We are absolutely delighted to welcome Scott to WellChild for CYP Takeover Day. I’m sure we will learn a great deal from him to further inform our work with seriously ill children and their families across the UK. It is great to be working alongside Gloucestershire Young Carers who have such fantastic relationships with the children and young people they support.”

The idea of CYP Takeover Day – an initiative run by the Children’s Commissioner – is to give young people the chance to benefit from the opportunity to experience the world of work and make their voices heard, while adults and organisations can gain a fresh perspective on what they do. The hope is that this will help break down barriers between generations and encourage children's active involvement in their communities.

Ele Semadeni, Operations Lead at Gloucestershire Young Carers, says: "As a charity we are keen to offer young carers the opportunity not just to take a break from their caring responsibilities and do something that is just for them but also to have the opportunity to talk about their experiences of being a carer. We hope Scott will have a great day working with both charities and offering his point of view on the impact of having a disabled sibling in the family."

WellChild welcomes the launch of the 'Turning Tide' report

WellChild welcomes the launch today of ‘Turning the Tide’. This report launched by RCPCH calls for the UK to improve its commitment to progressing research into childhood diseases.

Read the report here.

WellChild will join together with RCPCH, other Royal Colleges, government as well as other Children’s charities to campaign for change.

Super skydive for WellChild

Well done to Chris Barber of Venture Photography Leamington Spa who raised money for WellChild through a sponsored skydive.

Here's a video of Chris taking part in his challenge.
http://www.youtube.com/watch?v=VfBnemQiSJ0

A warm welcome for London WellChild Nurse Sue

WellChild Nurse Sue Donald with one of the children she cares for A warm welcome to new WellChild Children's Nurse Sue Donald who is based at The Evelina Children’s Hospital, part of Guy’s and St Thomas’ NHS Foundation Trust, in London.

This week is the official launch of the post of WellChild Complex Care Discharge Coordinator, Sue Donald, who will be helping seriously ill children with long term and complex health needs to leave hospital and return home to their families with the care and treatment they need.

Working closely with colleagues at The Evelina Children’s Hospital and local communities where families live, Sue will arrange and coordinate the care needed for children with complex care needs to live at home. She will also provide emotional and practical support for the whole family. Prior to this post Sue spent many years working in the community and has previously managed a Children's Community Team and Continuing Care Team. She therefore brings considerable expertise and a comprehensive understanding of the needs and challenges faced when transferring a child from hospital into the community.

Children who have serious illnesses and complex conditions will benefit from the service provided by the new WellChild Children’s Nurse, such as 11-month-old India from Wimbledon who was born with a chromosomal disorder which means she has trouble breathing. Following months in hospital, major surgery and two cardiac arrests, India now has a tracheostomy and specific help with breathing at night. She is finally at home with her parents and older sister where she is developing in leaps and bounds and delighting everyone with her big smile.

WellChild Nurse Sue Donald with fellow nurse Lorraine Arnavout and baby India Stern and her mother Suzy WellChild’s pilot Children’s Nurse programme began in 2006, and the success of that pilot has resulted in the creation of permanent posts in Ayrshire and Arran, Birmingham, Bristol, Cambridge, Cardiff, Cumbria, East Sussex, Hywel Dda in Wales, Liverpool, London, Oxford, Southampton and Yorkshire, with a post in Manchester to start later this year.

Linda Partridge, WellChild’s Director of Programmes, said: “It is important that the essential service now provided by WellChild Children’s Nurses in regions of the UK have a long-reaching impact. Our target is for every seriously ill child or young person to have access to a WellChild Children’s Nurse, and I am delighted that we have now been able to extend that support to the patients at The Evelina Children’s Hospital.”

Lorraine Arnavout, Matron for General Paediatrics, General Surgery and High Dependency at the Evelina Childrens Hospital said: "I am delighted to welcome the WellChild Children’s Nurse to the Evelina Children's Hospital. Working alongside children with complex needs and their families, whilst they are in hospital, offers phenomenal support and enables the families to have a smooth transition to the community. Sue is both dedicated and knowledgeable. Her open, honest approach with families really helps them to prepare for leaving hospital."

Sick kids to benefit from Marex Spectron charity day

WellChild will be among the good causes to benefit from a Charity Day organised by leading global broker Marex Spectron.

Actor Ollie Phelps from the Harry Potter movies and swimming legend Mark Foster both kindly turned up to support WellChild at the event. Our pictures show them making financial trades and with WellChild staff.

Marex Spectron is donating gross profits generated on November 15 to a number of children’s charities including WellChild, as part of the firm’s 2012 Charity Day. The other children’s health charities chosen to benefit in the UK are Shooting Star Chase, Rays of Sunshine, and Sparks.

In the US, Marex Spectron will be supporting Autism Speaks, and in Hong Kong, Mother’s Choice. In addition, Marex Spectron will be making a small number of individual donations to a range of charities nominated by members of staff.

WellChild Chief Executive Colin Dyer said: “It is fantastic that Marex Spectron is supporting us in this way and we are really looking forward to the Charity Day. The organisation can be sure that funds raised for WellChild will be spent helping seriously ill children and their families in the UK in ways which make a real difference to their quality of life.”

Gavin Prentice, Managing Director of Marex Spectron Group, said: “We are delighted to be supporting a wide range of charities that are all doing incredibly valuable work in the field of children’s health. We are thrilled to be in a position today to support the work that all the charities are tirelessly doing in this field.”

Last year, Marex Spectron raised a record $1 million for The Fairbridge Programme of The Prince’s Trust and The Children’s Storefront.

Dancestars do Strictly for WellChild

Gloucestershire dance school Dancestars will be putting on a ‘Strictly Come Dancing’ show at its annual Christmas party later this month to raise money for county based children’s charity WellChild.

Dancestars is based in Gloucester and teaches ballroom and Latin dance to pupils of all ages, from young children to adults. Its Christmas party takes place on Friday November 30 from 7.30pm at the Wotton Hall Club, Barnwood Road, Gloucester.

At the event pupils from the school will put on a display to show what they have been learning throughout the year and there will be a raffle and fundraising for WellChild.

Dancestars principal Sarah Hall said the event is always lots of fun and urged everyone to come along.

She said: “This year we have a Strictly Come Dancing theme for our event for the juniors and it should be great fun. We also have a new venue. This is the fourth year we have been able to help WellChild through our Christmas party and it is great to know that as well as having a good time and doing plenty of dancing we will be helping seriously ill children.”

WellChild Communications Officer Chris Hill said: “Dancestars are great supporters of WellChild and we are very grateful that they are donating the proceeds from this year’s Christmas Party to help our work with sick children and their families. The event is always a great occasion and a lot of fun.”

Tickets are available from Sarah Hall on 01452 423234 or on the door at £10 for a family of four or £3.50 for adults, £2 for children.

Only a third of parents of premature babies are aware of bronchiolitis

Only a third of parents of premature babies are “aware” that their child is at high risk of contracting bronchiolitis when leaving a paediatric or neonatal care unit, according to an NOP survey. This is despite the fact that bronchiolitis is the most common cause of hospital admissions in children under one year of age.

The survey commissioned by Abbott, the global healthcare company, to coincide with the second year of the national bronchiolitis awareness campaign, explored parents' knowledge of the condition.

Bronchiolitis affects one in three babies in the UK. It is a seasonal condition which usually occurs in the winter months between October and March. It is caused by an inflammation of the tiny air passages deep inside the lungs, which causes breathing difficulties. This is often confused with bronchitis, which affects the main airways in the lungs. While the majority of bronchiolitis cases are serious, babies born prematurely or with heart or lung conditions are at greater risk of more severe complications.

The survey involving 1,973 parents aged 18-40 years old with a child under five also revealed that despite its prevalence only one in ten parents associate the characteristic symptoms of severe bronchiolitis - namely the rasping cough, faster breathing, loss of appetite and high temperature - with the condition. Many parents continue to confuse the tell-tale signs of bronchiolitis with those of the common cold or flu.

The symptoms of bronchiolitis can be very similar to a cold; however, babies with more severe bronchiolitis exhibit four symptoms (F.A.C.T), the most significant of which is a distinctive rasping cough:

• Fast breathing: shallow, quick breaths not taking in much air

• Appetite: inability to feed

• Cough: distinctive rasping cough

• Temperature: high temperature, usually with cold-like symptoms such as a runny nose

Dr Shree Vishna Rasiah, a consultant neonatologist at Birmingham Women’s Hospital NHS Foundation Trust says: “Whilst today’s research suggests that hospitalisation rates for bronchiolitis are rising, awareness remains low, even among parents of high-risk babies. Education and prevention are the only way to reduce the number of babies presenting to hospital with breathing and feeding difficulties during the winter season.”

“I would advise all parents of young infants, particularly those with premature babies, to practice simple prevention methods at home such as good hand hygiene, regular washing of toys and keeping babies away from older children and adults with cold and flu like symptoms. These measures would reduce the risk of a baby getting bronchiolitis. In babies with bronchiolitis, it is important to be vigilant and seek medical advice early if there are concerns about the worsening breathing and feeding difficulties.”

Additionally, according to the results of another NOP survey, commissioned by Abbott in 20115 and released today, the wider impact of bronchiolitis on families is also significant. Nearly two-thirds (63%) of parents whose child had had bronchiolitis said they needed to take time off work to care for them and almost a third (31%) reported taking one to two weeks off work – mostly unpaid. Half of these parents said their child had been hospitalised for the condition and that bronchiolitis had placed moderate-to-severe stress on their relationship with their partner and/or family.

Abbott commissioned both surveys as part of its ongoing More Than A Cold campaign, announcing the results to mark the start of the bronchiolitis season – a time when paediatric intensive care units across the country brace themselves for the “rush hour” traditional winter peak in activity.

The awareness campaign is being supported by the www.morethanacold.co.uk website, which provides parents with accessible information about bronchiolitis.

Who Cares? Conference highly successful

All the speakers at the conference

After months of planning we are delighted to report that the joint Action for Sick Children and WellChild conference, 'Who Cares? Supporting Children and Young People through changes in Health Care' was a highly successful day.

Dr Mark Whiting Those attending had the opportunity to hear a range of presentations on some of the current and to some extent ongoing challenges facing health care provision for children and young people.

Professor Ian Lewis, Medical Director, at Alder Hey Children’s Hospital and Co-Chair of the recent Children & Young People’s Health Outcomes Forum gave an overview of the work of the forum and the important recommendations coming from this work.

In his key note speech Professor Sir Al Aynsley Green threw down the gauntlet to the delegates by asking "who really does care?"

Other key topics covered during the day included the changing role of the GP, Better at Home?, transition from children’s to adult services and improving outcomes for children and young people with mental health problems.

WellChild Chief Executive Colin Dyer Delegates also had the opportunity to take part in a round table discussion and hear a parent and young person's perspective on the challenges for health care as well as being able to debate the valuable role of play as well as the need for more emotional and psychological support for families, especially in the community.

We would like to sincerely thank members of WellChild's Professional Advisory Panel Dr Janet McDonagh and Dr Kathryn Bannell, along with Dr Mark Whiting, member of our Nursing Advisory Panel and Katie Booth, WellChild Nurse in Kirklees for agreeing to take part.

A huge thank you must also go to Emma Twigg, Clinical Psychologist at Alder Hey Children's Hospital and 2012 WellChild Award Winner as Best Health Professional for being part of the round table discussionWe are also pleased that Dr Hilary Cass, recently elected president of RCPCH, was also able to attend and give an overview of the future priorities for RCPCH.

We have received very positive feedback from the day and WellChild would like to thank our colleagues at Action for Sick Children for their sterling work in working with us to make the conference a huge success.

Petticoat Fair a great success!

Cheltenham’s Petticoat Fair and Adele Parks brunch were a fantastic success for WellChild on Sunday October 21st

The event, at The Daffodil restaurant in the town, raised £3,222 for WellChild to help support its work with seriously ill children and their families.

The event included a fabulous 40s and 50s inspired event with vintage stalls and three retro-themed with each guest receiving a girly goody bag full of make-up sponsored by a local company and a delicious afternoon cream tea.

Workshops taking place throughout the event included creating your own 50s headpiece, jewellery out of old buttons and beauty tips from the 40s and 50s and stalls offering vintage fashion, replica vintage, textiles, art, jewellery and much more.

Also on the day WellChild celebrity ambassador and famous author, Adele Parks, (pictured bottom right with guests at the event) whose books have all been top ten best sellers, held a brunch where she talked about her life and work as a writer. See all the pictures from the event on Flickr here.

Children at risk of eating disorders have higher IQ and better working memory

Children at risk for eating disorders on average have a higher IQ and better working memory but are less able to control automatic thoughts, according to researchers at the UCL Institute of Child Health (ICH). The study, published in the journal Psychological Medicine, looked at what characteristics might make some children more likely to develop an eating disorder later in life.

Funded by WellChild, the national charity for sick children, this was the first large-scale study of children aged 8-10 deemed to be at high risk of developing an eating disorder, due to having a family member with anorexia, bulimia or both. Importantly, the children did not show any signs or symptoms of such a disorder at the time they were studied.

Using data from the Children of the 90s study (ALSPAC) at the University of Bristol, the study looked at intelligence and attention in 6,200 participants when they were eight and at their working memory and inhibition when they were ten (participants are now aged 19-21). In the original ALSPAC study, intelligence and cognitive function were assessed using a version of the Wechsler Intelligence Scale for Children, which tests general cognitive ability. Approximately 3.7 per cent of the children were considered to be at high risk.

Compared to children at low risk, the children in the high-risk group showed some significant cognitive differences. Those who had a close relative with anorexia were found to have better working memory – the ability to temporarily hold and process useful information while suppressing irrelevant information – and a higher IQ, on average. However, this group also showed reduced attentional control. In other words, they were less able to inhibit a well-learned response in a test where they were prompted to say the opposite of what they would normally say. Children with a family member with bulimia nervosa were found to do less well in tasks involving the assembly of an object, displaying poorer visuo-spatial functioning than the control group.

Further research is required to confirm and better understand the implications of these findings. The team are currently seeking funding to understand if these differences lead to later eating disorders.

Radha Kothari, author of the study, says: “Cognitive differences have been observed in patients with eating disorders, but by looking at children at an early age when they had not yet developed an eating disorder, we could rule out the confounding effects of poor diet on the brain. This meant we could focus on characteristics that might increase the risk of developing an eating disorder, rather than characteristics which might be the result of an eating disorder. For example, being less able to inhibit the brain’s automatic response in the tests given here might later translate into an inability to inhibit thoughts about weight and shape. Or struggling with visuo-spatial perception might later lead to the perceived distortion of body shape that is commonly experienced by people with eating disorders.”

Dr Nadia Micali, who led the research, says: “Although more research is needed to clarify these results, these findings should nevertheless help in the identification of vulnerable children, and in furthering our understanding of which neuropsychological characteristics may make a child susceptible to an eating disorder. This, in turn, should guide the future development of targeted preventative strategies.”

Collection thanks to RAG Karnival

The Nottingham Uni RAG Karnival carried out a fantastic collection for WellChild in Cheltenham on Saturday October 6.

Around 60 students from the Uni descended on the town all wearing fancy dress to raise much needed funds for WellChild’s work with seriously ill children and their families.

The cash collected is still being counted but WellChild would like to thank the RAG Karnival for all their hard work and enthusiasm in supporting us.

Our pictures show some of the fundraisers in fancy dress (left) and RAG Karnival organisers Taran Driver and Nicola Fowler (right).

Scumrun announce WellChild is their charity for 2013

WellChild is delighted to have been chosen as the beneficiary charity for the Scumrun 2013. This hugely popular event is a drive around Europe for cars costing no more than £500 and each year it raises lots of money for a children's charity. in 2013 the chosen charity will be WellChild.

the organisers of the event released a press release today which said: "The Scumrun team are delighted to announce the chosen charity for this year's event. A huge number of fantastic children's charities were suggested, and WellChild are now confirmed as the 2013 beneficiary charity.

WellChild help sick children and their families throughout the UK as they deal with the consequences of serious illness and complex conditions. Their mission is to reach as many children and young people as they can, year after year. WellChild focus on three key areas - care, support and research

- and their involvement in so many aspects of children's health puts them in a unique position.

WellChild Chief Executive Colin Dyer said: "We are delighted that WellChild have been chosen as the beneficiarly charity for Scumrun 2013. It is a fantastic event for WellChild to be involved in and will really help us in our work of care, support and research to improve the lives of seriously ill children and their families across the UK."

One of the most rewarding, but hardest tasks of each year's event kick off, has been particularly difficult this time around due to the calibre and quantity of charities put forward. The Scumrun team are, however, confident WellChild are a great choice and delighted they have been selected to benefit from the event's 2013 fund raising efforts.

"We are really pleased to be associated with this fantastic charity, and look forward to working with the team." said Ed White, Managing Director of Scumrun."

Busy time for Roadtrip fundraisers

Fundraisers from The Charity Roadtrip who are raising money for WellChild have had a busy few weeks.

Over the August bank holiday the group held a Family Fundraising Day at a local pub The Wheatsheaf in Worthing where they are based, raising over £1000. They had a Hog Roast, Raffle, tombola and lots of attractions for children, to raise money.

Then on Friday September 14 the group held a charity 20/20 cricket match at Steyning Cricket Cub just north of Worthing. They raised funds by selling raffle tickets, holding a BBQ, and after the game held a charity auction. It was a fantastic night raising £1,500.

The Charity Roadtrip fundraisers are raising money for WellChild’s work with the rare condition Wolfram Syndrome. Earlier in the year they held a road trip around the UK, including a climb to the top of Snowdon.

Shamim's super singing for WellChild

Shamim Ashraf, who works for Argo International, one of our charity of the year partners, broke the sound barrier with an unusual fundraising effort for WellChild recently.

Shamin has always dreaded the idea of doing Karaoke but he decided to face his fears in order to raise money for WellChild’s work with seriously ill children and their families across the UK.

He took to the stage to give his rendition of Mr Brightside by The Killers wearing a fetching pink tutu and in the process raised more than £1,250 for WellChild.

Our thanks to Shamin and all at Argo for their brilliant fundraising work.

You can see a video Shamin’s valiant efforts at Karaoke here

Duncan and Ed support WellChild at BGC day

Entrepreneur and Dragon’s Den guru Duncan Bannatyne and Sky Sports Anchor, Ed Chamberlin turned out to raise money for WellChild at the 8th Annual BGC Partners Charity day on Tuesday 11th September 2012.

Taking place on BGC’s trading floor in Canary Wharf, the day was a hive of activity and buzz as our guests got stuck in with the traders by getting on the phones and helping to close those all important deals.

Every year on September 11, BGC donates its global revenues to charity in commemoration of those lost in the World Trade Center attacks.

This year, the event raised in excess of $12million which will be distributed between charities around the world. WellChild is very proud to have been chosen as one of the charities to benefit from the day.

Colin Dyer CEO of WellChild said, “the BGC Charity Day was extremely inspiring. We were hugely proud to be involved in such a special day and the money raised will be of great help to seriously ill children and their families across the UK.

"On behalf of all the team at WellChild, I would like to express our deepest thanks to everyone at BGC”.

Polo Princes aid WellChild

WellChild was among the charities to benefit from a Polo day with some royal guests which took place in Cirencester on Sunday August 5.

WellChild patron Prince Harry and his brother Prince William took part in the charity polo match at Cirencester Park. Competing on opposing teams, the princes took part in the Jerudong Trophy to raise money for WellChild and two other charities they support.

WellChild Chief Executive Colin Dyer said: "We would like to thank the organisers and all of those who took part and attended for raising money for WellChild's work with a fantastic day of sport."

The money raised at the event will go to support WellChild’s work with seriously ill children and their families across the UK.

You can read a report of the event and see pictures in the Daily Mail here.

New WellChild Nurse Jodie is welcomed to her role in Southampton

WellChild Nurse Jodie Hiscutt with one of the children she supports WellChild is funding a new post at University Hospital Southampton NHS Foundation Trust, to provide a WellChild Children’s Nurse. The new Nurse, Jodie Hiscutt will be helping seriously ill children across the region whose long term and complex health problems means they need medical support to breathe. Jodie will provide support and training to these families to enable children to leave hospital and return home with the care and treatment they need.

Jodie will be based at Southampton General Hospital, working closely with colleagues providing long term ventilation support in the hospital and community. As well as arranging and coordinating the care needed for these children to live at home, the WellChild Children’s Nurse will provide emotional and practical support for the whole family. Prior to this post Jodie worked on the Paediatric High Dependency Unit at Southampton General Hospital. She therefore brings considerable expertise and a comprehensive understanding of the needs and challenges faced when transferring a child from hospital into the community.

Children who have serious illnesses and complex conditions will benefit from the service provided by the new WellChild Children’s Nurse, such as 11-month-old Rhiannon from Basingstoke who has chronic lung disease and spent the first six months of her life in hospital. Rhiannon is oxygen dependent and needs help breathing at night time, so it is important that all staff and services involved in caring for her at home and in hospital are effectively coordinated.

WellChild’s research demonstrates that at any one time there are 100s of children who have been in hospital for more than three months. Many of these children have spent the majority of their lives sleeping in wards rather than bedrooms and, because of all the specialist care they need, they are unable to join their parents and siblings even for key family events such as birthdays and Christmas. WellChild is running a campaign, in conjunction with the Royal College of Nursing, to explore the issues around improving care for children with complex health needs at home.

Ruth Brinkley, Long Term Ventilation Nurse Specialist at Southampton General Hospital, said: “By working alongside these families in hospital and at home our new WellChild Children’s Nurse will provide them with the vital personal support they need to return and stay at home by helping them access the excellent services already in place this area. We are delighted to have Jodie as a welcome addition to our team of specialists in long term ventilation and this invaluable post exemplifies all we are striving to achieve for children’s health services in Southampton and surrounding areas.”

See a video of Jodie talking about her role to the Southern Daily Echo here.