Frequently Asked Questions
1. What is Tŷ Hafan?
Tŷ Hafan provides comfort, care and support to life-limited children, young people and their families throughout Wales. We’re a helping hand to the whole family; with them every step of the way if they so wish. We try to give them a sense of normality; to become a family once again. We’ll go to the families wherever is necessary, whether it be in their family home, hospital or school, and we’ll support them for as long as they need us.
2. How does Tŷ Hafan help these families?
With life-limited children and young people, care is often given over a number of years. We offer short break care to give families desperately needed time-out, which can include accommodation for any family member that wants to stay over. We also provide relief and support outside the hospice, at home and in the community to ensure that each child has a comprehensive care programme.
3. How are children/young people referred to Tŷ Hafan?
We offer our service to all children and young people in Wales who have a life-limiting condition. Anyone can refer a child or young person, as long as they have the permission of the parents. It can be a family member, medical professional, social worker, neighbour or friend.
4. Is there a waiting list?
No. If the parents are happy for their child to be referred to Tŷ Hafan they complete a form giving us permission to ask their paediatrician for a medical report.
If the child or young person’s condition meets our criteria they are eligible to use our services and it is then that an assessment of their needs is carried out. The whole family is taken into consideration when devising a suitable, tailor-made care programme.
5. What is a “life-limiting condition”?
Life-limiting means there is no reasonable hope of cure and there is a strong possibility that the child or young people will die before adulthood.
6. What conditions do the children and young people have?
A wide range including Duchenne muscular dystrophy, cystic fibrosis, severe cerebral palsy and some very rare genetic conditions. Some children are diagnosed at birth; some in early childhood; others receive no diagnosis, or at some point treatment has been stopped.
7. How many of the children and young people have cancer?
Less than 5%.
8. Do the children/young people know they are going to die?
Some do: it depends on their age, condition and circumstances
9. How old are the children and young people who use Tŷ Hafan?
We take children from birth up until their 18th birthday. If a young person reaches 18 they are no longer able to come to Tŷ Hafan for short break care, but we continue to support them and help them through the transition to adult services. This may include using an adult hospice.
10. Where do the children and young people come from?
Our catchment area is mid, south and west Wales (from Aberystwyth downwards) but we will accept a child or young person wherever they live in Wales.
11. What are the differences between adult hospice care and children’s hospice care?
- Focus on quality of life rather than end of life
- Care is provided over a long period of time
- Many life-limiting conditions deteriorate slowly, which puts an enormous strain on family life
- The average stay in an adult hospice is 13 days; the average stay at Tŷ Hafan is 13 days a year.
12. Can the whole family stay at the hospice for short break care?
The whole family is welcome, not only parents but also grandparents, aunts, uncles, brothers and sisters.
13. Does the Tŷ Hafan hospice ever close?
Tŷ Hafan is open all year round. We close twice a year for statutory staff training. During this time we provide 24 hour on-call service and in the event of an emergency, we can accommodate a family.
14. Does Tŷ Hafan have a patron?
Yes. HRH The Prince of Wales.
15. How much does Tŷ Hafan cost?
It costs £3.4 million a year to maintain this service which is provided free to families in Wales who need its help and support. This cost rises year on year.
16. How does Tŷ Hafan raise the money?
- 22 charity shops with a further one planned in 2013
- Largest and most efficient hospice lottery in the UK with over 42,000 members. The Tŷ Hafan lottery is called “Crackerjackpot”
- Tŷ Hafan-organised events (e.g. Welsh3peaks, Midnight Sleep Walk, Taff Trail Cycle Challenge)
- Support from businesses
- Fundraising activities by schools, churches, groups and individuals
- Gifts in Wills
- One off donations perhaps through our website.
17. Does Tŷ Hafan receive any funding from the government?
Tŷ Hafan is independent from the NHS and has no guaranteed statutory funding.
In 2009/10, Tŷ Hafan received £428,768 from the Welsh Assembly Government and the Local Health Boards.
18. What are Tŷ Hafan’s two straplines?
Providing care, being there
describes what we do
The family hospice for young lives
describes what Tŷ Hafan is. The introduction of the word “family” reinforces our core values and softens the term “hospice.” The words “young lives” ensure that young people are included and emphasises the ethos of providing quality of life.
19. What does the logo represent?
- An age and gender-neutral group representing family members, carers, volunteers and/or staff
- It brings the family centre stage
- Pebble shape is reminiscent of the memorial garden at the hospice
- Represents the strength of the organisation and supports the family inside
- The arm embracing one group member gives comfort, reassurance and strength.
20. How can donations be made to Tŷ Hafan?
- You can make a one off donation online or set up a direct debit to make regular monthly payments.
- Or if you would prefer donations can be made by cheque through the post to Tŷ Hafan Head Office, Hayes Road, Sully, CF64 5XX
- Or why not pop into one of our shops with your cash donation or cheque made payable to Tŷ Hafan.
21. What is palliative care?
- Children's palliative care is an active and total approach to care, embracing physical, emotional, social and spiritual elements. It focuses on enhancement of quality of life for the child and support for the family and includes the management of distressing symptoms, provision of respite and care through death and bereavement.
- Association for Children's Palliative Care (ACT) and the Royal College of Paediatrics and Child Health 1993.
22. Where is the hospice?
- The hospice is near Sully, in the Vale of Glamorgan, south Wales. But, many of our services are delivered in the community.
23. How much do families pay?
- Nothing our service is free.
24. How do I raise a complaint?
- Tŷ Hafan is committed to providing high standards of service and to continuously improve the standards of services we offer. However, we recognise that there may be times when our services may not live up to expectations. When that happens, we need to examine the circumstances surrounding the issue so we can try to resolve it quickly, fairly and effectively.