At the BDFA we offer support through our Family Support and Advocacy team. For newly diagnosed families - Most families tell us that the journey to diagnosis is prolonged, and they experienced periods where they felt unheard. Often when the diagnosis comes, parents feel numb, isolated, and alone. The diagnosis for families is the beginning of a grieving process that affects each family member differently at different times.
We are here, to listen, reflect with you on the information you have been given, and provide support to help you process the diagnosis. We can help you think about how you tell other people; we can support your extended family as well. We do this either over the phone or by zoom, facetime, or WhatsApp video calls. Often it is more comforting to see the person you are talking to.
We can provide an initial small grant of up to £500 to help with the increased costs that occur such as travel to appointments or for equipment that is helpful for your child. Find out more about grants here.
Throughout the Batten Journey
Suddenly families find themselves interacting with multiple professionals, it is difficult to know who you need, how to contact them and understand how they can and should help you.
We understand that for many parents having to re-tell their child's path to diagnosis and how they are now can be distressing. We are here to support you, we can explain who you may need, and provide support with education, social and healthcare services, attend meetings with you (remotely) acting in an advocacy role, provide training sessions for professionals and paid carers, and training sessions for families.
Parents of newly diagnosed children will often ask to be connected to another family. We believe that supporting families within the Batten community to be connected can be invaluable, speaking to other family members who are on the same path is hugely beneficial.
Our Peer Befriending Service works in synergy with our core family support services providing various ways for parents and carers to regularly connect.
Groups are on forums that meet remotely via Zoom and include; Dad's chat, Mum's chat, CLN-type specific groups and a closed family page on facebook.
Through all of these forums parents have the opportunity to get to know each other and reach out to one another. Our Peer befriending service also provides 1:1 support.
Find out more about Peer Befriending Service.
Our Family Support and Advocacy team can also provide assessments for your child and develop a care plan, which is helpful when meeting new professionals - Social Workers, Teachers, Doctors, other Health Care Professionals and a useful tool to record changes.
We can provide guidance and advice when your child's needs change, such as advising re adaptations in the home, moving schools, transition to adult services and with the assessment process involved when moving from local authority support to health support.
Palliative Support
Palliative care is care given to improve the quality of life of a child or adult with a serious or life-threatening disease, such as Batten disease. Palliative care is an approach that addresses the child or young adult as a whole, not just their disease. The goal is to treat, as early as possible, the symptoms and side effects of the disease, in addition to any related psychological, social, and spiritual support for the individual and family.
Within the BDFA we recognise that the journey through Batten disease is a palliative one, much of our support centres on advising and supporting professionals and, crucially, in supporting family members as Batten disease affects the whole family. We aim to provide supportive and safe times to talk so individual parents can express their own views and feelings with us during each period of transition where loss of skill or ill health become more apparent and complex.
With this in mind, the BDFA provides a holistic family wellbeing/counselling service. If any family member feels this is something they are in need of we can refer them to the service for support.
See more about our Family Wellbeing Service here.
We can also provide guidance and advice with Hospital Passports and ReSPECT (Recommended Summary Plan for Emergency Treatment and Care) forms, both are beneficial for healthcare professionals, particularly in cases of emergency admission to hospital. The ReSPECT form enables the parents and Doctors to openly discuss and document person-centred decisions for their child, both in emergency situations and at the end of life. The respect form can be updated as needed throughout the child's disease process.
Support at End of Life
As the child or young person becomes more dependent on others for their daily support needs, they will have a greater need for healthcare professionals to be involved, we support these relationships between Parents and Community Nurses, Hospices and other healthcare providers as needed, recognising that, at this time, these relationships are key to assisting a family through such a complex and emotional time.
Download our support leaflet below