Organisations who support
Parents and Families in Hospital
Further Support
Depending on your situation, you may need further support, especially if you are the parent or carer of a child with a disability or long-term condition.
If you are in one of the UK’s children’s hospitals, you can find a directory of hospital facilities here. For all other hospitals, search online for your hospital plus the facility you’re looking for or ask your bedside nurse.
If you want to find out more about your child’s diagnosis, the NHS has a Health A-Z which explains lots of health conditions and treatments.
Organisations who support
Parents and Families in Hospital
- If your child was born prematurely or born sick, you are likely to be in a Neonatal Intensive Care Unit (NICU) or Special Care Baby Unit (SCBU). Bliss (a leading charity for premature and sick babies) has advice and support here.
- Contact (a leading charity for families with disabled children) have a network of ‘By Your Side’ parent advisers, who are able to guide parents through the maze of medical departments and jargon they face.
- If you are a kinship carer, Kinship is the leading kinship care charity in England and Wales, working to ensure every kinship family has the recognition, value and support they need and deserve. (Kinship carers are the grandparents and siblings, the aunts, uncles, and family friends who step up to raise children when their parents aren’t able to.)
Good, clear communication is an important part of how the NHS operates.
Public Health England has published a Language Interpreting and Translation Guide for medical staff. You can use this to ask for an interpreter (for conversations) or a translation (for documents).
Where language is a problem in discussing health matters, NHS England and NHS Scotland guidance says that a professional interpreter should always be offered, rather than using family or friends to interpret. If you need an interpreter, ask your bedside nurse.
Most hospital leaflets are provided in a range of languages. If you need a translation, ask your bedside nurse.
If you find talking to your bedside nurse difficult, Google Translate is a good basic tool which can translate text, documents and conversations as you need them. It is not a substitute for professional interpreters or translations, and should only be used for basic needs.
Managing life when you have a child in hospital can be even more complicated for single parents and carers.
The NHS has advice for single parents, which includes help on finding support.
Gingerbread is a UK charity supporting single parent families to live secure, happy and fulfilling lives.
Confident Conversations wants to develop a better understanding of single parent and carer experiences in hospital in the UK. If you would be interested in working with us on this, please contact us.
The impact of being an LGBTQ+ parent or carer in hospital has not been well studied in the UK. A 2021 review of international studies found that many LGBTQ+ parents and carers had positive experiences while others had encountered overt homophobia. However, there remained an underlying sense of heteronormativity, with many healthcare professionals making heterosexist assumptions and healthcare forms being heterocentric.
Confident Conversations wants to develop a better understanding of LGBTQ+ parent and carer experiences in hospital in the UK. If you would be interested in working with us on this, please contact us.
The impact of being a disabled parent or carer in hospital has not been well studied in the UK.
Confident Conversations wants to develop a better understanding of disabled parent and carer experiences in hospital in the UK. If you would be interested in working with us on this, please contact us.
Fathers can feel sidelined when they are in hospital with their child. Medical professionals often assume that mothers are their child’s primary caregivers and common social stereotypes about fathers are often heard.
However, don’t let that put you off. You are a vital part of your child’s care and recovery. You have an important role to play and deserve to be a partner in your child’s care.
You may be interested in this study, reported in the Nursing Times, ‘Fathers’ roles when their child is in hospital’. The authors found that the role fathers play in caring for their family during a child’s unplanned hospital stay is often overlooked and underestimated, and they are not equal partners in care. However, they concluded that fathers are active participants in care and that children’s nurses need to be aware of the importance of practising truly family-centred care.
If you are separated from your child’s other parent, Separate Dads has some advice on your right to be kept informed, including on medical issues.
Confident Conversations wants to develop a better understanding of fathers’ experiences in hospital in the UK. If you would be interested in working with us on this, please contact us.
Your Right to Information
Your Right to Information
In 2016, the Accessible Information Standard came into force in the NHS. It requires any organisation providing NHS or social care to communicate in a way that everybody can understand. Healthwatch has a good explainer here, which tells you what to expect.
If you are not receiving the information you need, and the medical professionals caring for your child are not sharing it – or not sharing it in a way that you find helpful – you can make a formal request through:
- A Subject Access Request (SAR): for personal information about you and/or your child, which the hospital holds (e.g. medical records).
- A Freedom of Information (FoI) request: for public information or information not about yourself (e.g. mortality rates at a hospital paediatric unit).
More information on how to make SAR and FoI requests below:
- In England
- In Wales: FoI requests. SAR requests must be made to each individual healthcare provider (e.g. each hospital).
- In Scotland: FoI requests and SAR requests
- In Northern Ireland: FoI requests and SAR requests.
Children with Serious, Long-Term Conditions or Disabilities
Children with Serious, Long-Term Conditions or Disabilities
A serious diagnosis can be very frightening and you may want, or need, some extra support, especially when you go home from hospital. There are some wonderful charities, and support groups (especially on Facebook), online for parents of children with underlying and long-term conditions but it’s worth exercising a bit of caution even with these. Look at the purpose of the charity/group, what they do and – for groups – how many members they have. Some will be specific for your child’s condition and some will be more general.
The NHS has information on caring for a child with complex needs here.
The following UK charities have expertise in supporting children with all kinds of underlying and long-term health conditions, including terminal and life-limiting conditions, their parents and families:
- Contact, for families with disabled children: supporting and bringing families together and helping them take action for others.
- The Rainbow Trust: supporting families with a seriously ill child.
- Well Child: making it possible for children and young people with exceptional health needs to be cared for at home instead of hospital, wherever possible.
- Council for Disabled Children: the umbrella body for the disabled children’s sector. Working towards a society in which disabled children’s needs are met and aspirations supported.
- Together for Short Lives, help families caring for a seriously ill child make the most of every moment together.
If you need specialist training to look after your child at home, or if you need a package of care support in your home, your hospital will discuss that with you – and should give you the training you need. Your local Clinical Commissioning Group will pay for any ongoing care when you’re at home so your hospital should start the conversation with them while you are in hospital, and tell your CCG what your child’s needs will be at home. Your hospital may also have a Hospital to Home service which can help you through this process. They may also be able to help you identify, and apply for, any benefits or charitable grants you are eligible for.
Am I a carer?
If your child has a long-term condition or disability you are likely to be a carer. A carer is anyone who looks after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support. The care they give is unpaid.
The NHS has more information on carers here, and the following UK charities support carers:
- Carers UK: making life better for carers.
- The Carers Trust: making life better for every unpaid carer in the UK.
Transitioning to Adult Services
Transitioning to Adult Services
Until the age of 18, services for children and young people with long-term health conditions are provided by child health and social care services. From 18, they’re usually provided by adult services. Between the ages of 16 and 18, the child will start a “transition” to adult services.
The NHS has more information on moving from children’s services to adult services here.
If your child regularly attends a hospital, they may also have additional information on transitioning to adult services.
More Support and Information
More Support and Information
- The NHS has a free app, which is a simple and secure way to access a range of NHS services on your smartphone or tablet. To use the app you must be over 13 years old and registered with a GP in the UK.
- NHS: Children and Young People’s Services, for more information on care and support options for children and young people.
- Patients Know Best: a social enterprise and technology platform, designed to bring together patient data from health and social care providers and the patient’s own data, into one secure personal health record. Add, access and share your health information with healthcare professionals, family and carers – anytime, anywhere.
Charity Registration No.: 1195742