Throughout August we’re focusing on the support available to families looking after a seriously ill child in Scotland, Northern Ireland and Wales. We’ll be publishing three blogs to celebrate the great work being done in these areas, and raising awareness of the help available for families affected by a life-limiting condition who may require support. The first blog, shining a spotlight on Scottish services, is available here.
Finding the right services can be a daunting prospect for families whose child is diagnosed with a life-limiting condition. It’s hard to know what will work for you, and what you’ll need as time goes on. For Welsh families, support services such as Tŷ Hafan, Tŷ Gobaith and Hope House offer a range of services from complementary therapies and day support to residential opportunities, helping families feel more supported and less isolated.
Ty Hafan
As a major Welsh hospice for children and families facing life limiting conditions, Tŷ Hafan works to ensure that children affected by serious illnesses receive the support they need to make the most of every moment.
The services they offer include:
- 24/7 emotional support for families looking after a child with a life-limiting condition
- Therapies and activities tailored to each child’s developmental level, with a focus on helping every child realise their potential. They can include music therapy, physiotherapy, hydrotherapy in their own specially designed pool and complementary therapy – usually in the form of massages, available to both children and carers
- Practical support including finding school places or specialist equipment
- Short breaks, allowing parents and carers to take a break and spend time as a family without the weight of caring responsibilities
- Sibling support
- End of life care and bereavement support
To offer a high standard of free care and support to the families of children in Wales who are expected to die in childhood.
Tŷ Hafan, Mission statement
Ty Gobaith, North Wales, Conwy
An accessible, specialised facility for the local Welsh population that caters its services to every family’s specific requirements – including ensuring it is available for those who speak Welsh as a first language.
This tranquil space gives families the time and resources needed to help manage life-limiting conditions, with the opportunity for families to stay at the house or unwind in the various relaxation rooms.
Tŷ Gobaith also offers a multi-sensory room, computer room, lounge, playroom, therapy room, kitchen, a dining room and a parents’ lounge. Their special bereavement bedroom has a private garden for use by newly-bereaved families.
Click here to find out more about what the hospice offers.
Hope House, Oswestry
As the sister hospice to Tŷ Gobaith, Hope House offers similar services with space for eight children and five families to spend quality time together, whether that be in the playgrounds, therapy rooms or dining areas. The communal areas give families the opportunity to spend time with other families going through a similar experience, helping them build networks and make friends who understand what they’re going through.
Both Hope House and Tŷ Gobaith offer respite breaks, giving parents time away from their caring responsibilities. The hospices’ staff are specially trained to look after children with very complex needs, so parents can take a break with confidence.
The hospices also offer sibling-specific support, ensuring that siblings can express their feelings and anxieties in a safe space, with or without mum or dad present. They also have the opportunity to take part in sibling outings, where brothers and sisters of a seriously ill child can meet and share experiences with others who understand their situation. Hope House and Tŷ Gobaith also provide professional bereavement therapy for siblings to help them understand and express their grief.
Following a bereavement, Hope House offers families the use of their snowflake Suite’ – a private space where families can spend time with their child after they have died. During this time, families also may wish to access the hospice’s counselling service, ‘Sunstone Counselling Centre’, which offers a listening ear and vital support to families following the loss of a child.
Alyvia goes for respite care – the nurses know all about her condition, have all the specialist medical knowledge and I know she is being looked after in a loving and caring way. We call the nurses our earth angels. I don’t know what we would do without them.
Alyvia’s mum Megan on Hope House
Caerphilly Children’s Centre
For families living in and around Caerphilly, this children’s centre provides a space for medical, therapeutic and emotional support to ensure that disabled children have the help they need to realise their potential. The ethos of the Children’s Centre is to keep the child at the centre of all they do, providing a “one stop shop” as far as possible for children, young people and their families.
There are a variety of programmes running, including:
- An assessment nursery for pre-school children with developmental delay, complex needs and disabilities, also a play scheme in the school holidays for children up to the age of 8yrs
- Shared Care (Respite) Service – provides a range of flexible and appropriate respite to support families of children 0-18yrs with a disability specifically through a home sitting service and supported leisure.
- Pathway to Inclusion Project – supports the inclusion of children and young people with additional needs and/or disabilities into community settings by early assessment and intervention, individual support in the home, and individual support to access a community setting.
Find out more about Caerphilly Children’s centre here.
Cerebra
Cerebra supports families where a child is suffering from a brain condition. Their mission is to listen to families that include children with brain conditions, and use their experience to inspire the best research and innovation. They then put the knowledge into practice so families can discover a better life together.
Find a few of their resources for Welsh families affected by brain conditions below.
Useful links
Looking after a disabled child in Wales
Action for Children has a section on their website dedicated to the work they do in Wales specifically, read all about their incredible work for Welsh children.
Scope has plenty of information for carers looking after a child with disabilities including local information specifically for Welsh families.
NHS Children’s Hospital Services
Cardiff Gov. Child disability information
Paediatric Palliative Care Services
Disability Sport Wales – find local inclusive sports teams and events
