On 30th November 1982 Helen House was officially opened by HRH The Duchess of Kent as the world’s first children’s hospice. This special day was the start of the children’s hospice movement.
There are now 54 children’s hospices across the UK and many more across the world, broadly modeled on Helen House in Oxford. And, in 2021/22 an average of 14,892 children were supported by children’s hospices across the UK.
Where it all began
Helen House was inspired by a little girl called Helen Worswick who in 1978, at the age of two and a half, was suddenly taken ill with a brain tumour. While Helen was in hospital her parents met Sister Frances Dominica and a friendship developed. Frances looked after Helen for short periods to give her parents a break. This friendship led to the idea of a small and homely hospice for children, which would be the first in the world.
The type of support and care that Helen’s parents and Helen needed and the quality of care her parents wanted for Helen, provided a blueprint for what the purpose–built children’s hospice would offer. The Worswick family and Sister Frances Dominica worked together to establish Helen House.
In Summer 1980 fundraising began with local media coverage. On 27th October 1981, only 18 months after the first planning meeting, Helen’s younger sister Catherine, then two years old, laid the foundation stone of the hospice which was to bear her elder sister’s name. Catherine later went on to be a Trustee of Helen & Douglas House from 2018–2021.
Helen House opens its doors
Abingdon in January 2004.
Nadia and her family first came to the hospice in 2012 and are just one of the many families we still support at Helen & Douglas House today
‘On our first visit I was gobsmacked, walking in to a clean and safe environment, full of colour, a warm welcoming atmosphere, and amazing staff. I was blown away at how well we were all looked after as a family in the best possible way I could ever have imagined. I could see straight away that the staff showed care, compassion, and dedication and this wasn’t just a job for them.
‘Zayn used the hospice for respite and then end of life care and the team were devoted to making his final days special. Sadly he passed away in April 2017 aged 4. The staff and doctors at Helen & Douglas House changed our lives and I was sad to say goodbye.
‘Little did I know that a few months later my other son Rayyan would be diagnosed with a completely different condition. Rayyan is now five and during his short life he has been cared for at Helen & Douglas House with respite care, emergency stays for acute symptom management and hospital step down discharges.
‘Even at home we can call the outreach team, care team or doctors 24hrs a day for advice and reassurance which we rely on to make decisions about Rayyan’s care. I would not wish our journey on anyone but I can say I feel blessed that we have had the opportunity to experience somewhere like Helen & Douglas House which we will always be grateful for.
‘I cannot imagine what it must have been like before children’s hospices existed over 40 years ago. For me it is a home away from home, somewhere I can relax knowing Rayyan is in the best of hands and trusting them to do a wonderful job. I can never thank Helen & Douglas House enough.’
Children’s Palliative Care as a human right
Clare Periton. Chief Executive of Helen & Douglas House said:
‘The core of what we do hasn’t changed over the last 40 years which is our commitment to providing world-class palliative care to children and support for their families during the most difficult of times and helping these children live life to the full creating precious memories.
‘However, since 1982 we have adapted and developed our care to meet the changing needs of the families we care for and utilised the latest medical advancements to move from a mostly respite- based model to providing more complex medical care where and when the families need this at the hospice, at home and in hospital.
‘The opening of Helen House has contributed to palliative care now being recognised as a basic human right for children by the United Nations. Helen & Douglas House contributed to WHO and NICE guidelines on the management of chronic pain in children and to many other international children’s palliative care policies and guidelines.
‘I would like to thank every member of staff, volunteer and supporter who has been with us on our amazing journey over the last 40 years. You have all had an important contribution to make to improving the lives of children with life shortening conditions.
Catherine Worswick, sister of Helen and trustee of Helen & Douglas House from 2018–2021 said:
‘40 years ago the public were inspired by Helen’s story to give generously to support the opening of the world’s first children’s hospice. Much has changed in 40 years, but the needs of children with life–limiting conditions and their families remain constant
‘Today offers a moment to reflect on what Helen inspired, and the enduring love and care which provides the blueprint for children’s hospices to this day. But it is also the chance to celebrate the children, families, staff and supporters who have been part of this story, and all who will be alongside families when they need it most for years to come.’
Our first supporter, now a volunteer
Pat Svensen one of the first supporters of Helen House in 1980. She is now a volunteer at the charity’s shop in Woodley, Reading.
‘In 1980 Sister Frances Dominica came to talk to the Young Wives in Cholsey where we then lived. She told us about a little girl called Helen and the impact her illness had had on her family – the inspiration for Helen House. While she was speaking you could have heard a pin drop. Sister Frances was visiting as many schools, groups and organisations as she could to share her vision with people and encouraged everyone to raise funds for what would be the first children’s hospice in the world.
‘At the end of the evening I was totally smitten with the idea of the Helen House and applied to have a collecting box at home. I still have it to this day!
‘I started saving sixpences (2½p today) and at the end of the year I sent my first cheque to Helen House. I then started baking cakes for people and asking for donations and increased my donations. From 2006 I was regularly sending a £100 cheque,
raised £430.90 at charity day and my daughter’s company donated £750.
‘Following retirement in 2011 I started as a volunteer at one the Helen & Douglas House charity shops in Reading and then transferred to the Woodley shop where I still volunteer today. I am very proud to be a volunteer for this amazing charity and to have been part of their 40-year history.’
Discover more of our history
A lot has happened in 40 years! From Royal visits, to refurbs, a BBC appearance and lots of fun events we’ve enjoyed so many memorable moments with children and families.