Who is this resource for?
Family carers whose relatives are adults (aged 18 years old and over) who have a learning disability, autism or both and are either:
- Currently in a mental health service
- Have recently been discharged from a mental health service
- Have a history of admission/discharge/admission
- Are at risk of being admitted to a mental health service
Although aimed at family carers of adult relatives, this resource will also be useful for family carers of relatives who are in the process of transitioning from children to adult services and have been identified as needing specialist support because of a mental health diagnosis and/or behaviour described as challenging.
The primary audience is family carers advocating alongside or on behalf of their relative, but the resource will also be useful for organisations and individuals working in partnership with family carers and their relatives.
Assuring Transformation Data published in March 2023 shows that 2,065 people with a learning disability, autism or both are currently in a mental health service, and family carers are acting as advocates for 41% of these individuals. That figure may be higher especially for those who have communication difficulties. Family carer advocacy may happen alongside statutory advocacy provided by professional independent advocates but at times family carers will be the main person advocating on behalf of their relative. Family carers bring a lifetime of knowledge about their relative including their likes, dislikes, feelings values and beliefs, how they are when they are well/unwell and how they communicate this. Advocating alongside or on behalf of their relative is not easy and family carers may need information about ‘the system’, their relative’s rights, their rights as a family carer and advice to support their involvement and how to fulfil their relative’s wishes.
This resource brings together information in one place that family carers told us they needed to know when they are required to advocate alongside or on behalf of their relative. Its focus is on what can be done to try and avoid admission to a mental health service. This is because research shows that once admission has taken place, discharge is a long and hard journey, and its delay regularly contributes to a deterioration in mental health and behaviour described as challenging. The information in this resource will also help family carers advocate for a robust discharge to reduce the likelihood of readmission.
Margaret Kitching (Regional Chief Nurse) and Rosemary (family carer) have written forewords for this resource. Margaret acknowledges the role and commitment of family carers and how important it is to have access to the right information at the right time. Rosemary tells us about her experience of advocacy and how she took on this role for her son.
Families are usually the main source of love, care and support for children and adults with learning disabilities. This is especially the case for people with complex needs. Even when people leave home, they do not leave the family. Families continue to offer a lifetime of involvement, support and advocacy. – Valuing People Now 2009
How this resource was developed
This resource was a joint regional project between the North West and the North East & Yorkshire regions and the Challenging Behaviour Foundation. Both regions were represented by family carer and professional independent advocacy organisations.
Pathways Associates (representing family carers)
Warrington Speak Up (representing professional independent advocates)
North East & Yorkshire regions
Bringing Us Together (representing family carers)
Advonet (representing professional independent advocates)
Cloverleaf (representing professional independent advocates)
Focus groups were held with family carers to identify what information they would find useful when advocating alongside or on behalf of their relative. In addition, questions and issues raised by family carers on social media groups and the CBF email network were monitored. Feedback from these sources was used to influence the content of this resource.
Where real people are described in example scenarios, their names have been changed for anonymity.
Family carers asked us, where possible, to include video clips and case studies and we have done this for all sections.
Links are provided to external information throughout the resource. Please note the Challenging Behaviour Foundation takes no responsibility for the content of external links. If you find any broken links, please contact us.
The CBF would like to thank everyone who contributed to this resource, in particular the family carers who informed and checked the content.
This project was one of over 30 funded by NHS England focussing on advocacy for children, young people and adults with a learning disability, autism or both and their family carers. Thank you to the NHS England teams from the North West and North East & Yorkshire regions for recognising the importance and value of family carer advocates and their support in developing and funding this resource.
The resource has 4 main sections: