Supporting families of complexly poorly children and families of child loss

Supporting families of complexly poorly children and families of child loss

Resources

Finding support that’s right for you

On this page you will find information and resources about other various organisations to help to support you:

Life Limiting and Life Threatening Illness Support

Hospice Care

NHS Services 

    If you need support urgently or need medical advice, please contact your

    local NHS service.

     

     

    These organisations provide a range of support and information to families with children with a life limiting or life threatening illness.

    Some of these organisations provide support depending on your specific experience, and others provide support generally.

    Life Limiting & Life Threatening Illness Support

     

    Jolly Josh – A local charity based in Rochdale that provides dedicated peer support and safe spaces for children, families and carers of children with disabilities, complex and special needs.

    Transport For Sick Children – TfSC and its volunteer drivers aim to reduce the transport barriers that any children living in Greater Manchester may have, to ensure equal access to health care.

    When You Wish Upon a Star – When You Wish Upon a Star has a simple mission, to grant the wishes of children living with a life-threatening illness.

    Rainbow Trust Children Charity – Supporting families who have a child aged 0-18 years with a life threatening or terminal illness.

    Homestart – Home-Start works with families in communities right across the UK. Starting in the home, the approach is individual.

    ReactRapid Effective Assistance for Children with potentially Terminal illness is a dynamic charity working to improve the quality of life for children with life-limiting illnesses living in financially disadvantaged households throughout the UK. 

     

     

    Together for Short Lives Helping families caring for a child with a condition that may shorten their life have as fulfilling lives as possible

    Gaddum Centre – Therapy, carers support and advocacy services across number of regions in Greater Manchester

    Jump Children’s Charity – Offering events and memory making activities including photoshoots.

    Daisy’s Dream – Professional support service which responds to the needs of children and their families affected by life threatening illness.

    Dreams Come True – Enabling children and young people with serious or life-limiting conditions from disadvantaged backgrounds to feel the long-term impact of having a dream fulfilled.

    Council for Disabled Children – The Council for Disabled Children (CDC) is the umbrella body for the disabled children’s sector in England, with links to other UK nations.

    Sebastian’s Action Trust – Providing respite breaks, holidays and single day visits to our purpose built facility in Hampshire for children with life-limiting or life-threatening illness and their families. 

     

    Hospice & Respite Care

     

    Derian House HospiceChildren’s Hospice covering some of Greater Manchester and Lancashire.

    Francis House Hospice – Children’s Hospice covering South Manchester, offering in patient end of life, respite and outreach support

    Forget Me Not Children’s Hospice – Offering a wide range of services, available at home, at Russell House, or even in hospital. 

     

     

    Claire House Helping seriously and terminally ill children live life to the full by creating wonderful experiences and bringing back a sense of normality to family life.

    Brian House Children’s Hospice – Brian House is a specialist unit within Trinity Hospice specialising in palliative care for children and families.

    Hope House Children’s Hospice – Providing care and support to life limited children, young people and their families. 

     

    NHS Services

     

    Thinking of you service – for contacting those in hospital.

    Institute of Health Visitors – UK Centre of Excellence supporting the development of universally high-quality health visiting practice.

    NHS (National health Service) – latest advice for the general public during COVID-19 lockdown.

    Telephone: 111 (for non-emergencies), 999 for all emergencies

    Support for Health Care Professionals and from other services (Gov.uk) here. 

    Royal College of General Practitioners – latest advice for GP’s during COVID-19 lockdown.

    Royal College of Nurses – latest advice for nurses during COVID-19 lockdown.

    Royal College of Obstetricians and Gynaecologists – latest advice for Obstetricians and Gynaecologists during COVID-19 lockdown.

     

    Royal College of Paediatrics and Child Health – latest advice for health care professionals specialising in child health and medicine during COVID-19 lockdown.

    CMV Action – a charity focused on raising public awareness of Congenital CMV and to campaign for better prevention measures within our health service.

    Group B Strep Support – information on group B Strep before, during and after birth provided online, by email and their helpline (weekdays 9am-5pm.)

    The Lily Foundation – providing families with support and information around mitochondrial disease.

    SMA Support UK – support for those who have or are caring for a child with Spinal Muscular Atrophy and information about the condition and the latest developments with new treatments.