Family experiences about children & young people with complex mental health needs

ESPCF would like to talk to families in East Sussex to help shape an NHS initiative which will provide keyworkers for children and young people with complex mental health needs.

We are keen to hear from families whose child or young person (aged up to 25):

  • is autistic or has learning disabilities, or both


  • has been admitted to, or is at risk of being admitted to, a mental health hospital or setting AND/OR
  • has visited A&E, or had contact with the police or SPOA (Single Point of Advice) because of the risk of harm to the child or young person in distress and/or to others

To give you a bit more context, we are talking about children and young people who have very complex needs and who are experiencing significant mental health challenges. It could be that one or several of the following has happened, for example the child or young person:

  • is a risk to themselves or their family
  • is on the point of needing what is called a CETR – a Care, Education and Treatment Review – or they might already have one, or they might be on the Dynamic Support Register (click here to read more about these)
  • is under the care of a psychiatrist but is not stabilising
  • has expressed thoughts of, plans for, or attempted suicide

If you think this reflects your situation, and if you feel able to talk about it, please get in touch.

What is involved?

Our aim is to gather your experiences, examples, and case studies about what happened and how you and your family felt as a result. What was the quality of care like? What support and/or treatment was or wasn’t offered? What would have helped the most?

We’ll be as flexible as possible to fit your needs, for example you might prefer emails, phone calls, online focus groups, or a chat over a cup of tea at home or elsewhere. We can also provide suggested talking points for you to use to gather your child’s or young person’s views, if it’s appropriate to do so. And your experiences can be as detailed or as brief as you like – all feedback on this is so important.

All of us in the ESPCF team are parent or grandparent carers ourselves. Please be reassured you will be talking to someone who will listen and understand, completely non-judgementally, and confidentially. No names will be included in any case studies or examples.

We understand that families who have had these experiences, or who are in the middle of it right now, may find it distressing to talk about. If you’re not sure about talking to us, that’s fine. We are happy to have an initial, confidential chat to see how it goes and you can then decide if you want any further involvement. There is no pressure or expectation of commitment.

Why is ESPCF asking about this and what will happen as a result?

ESPCF has received funding from the NHS specifically to hear from families with experiences about the situations described above. It is part of an NHS commitment to provide designated keyworkers for children and young people who are autistic or have a learning disability, or both, with the most complex needs. The aim is to make sure children and young people receive the right support at the right time, in a joined-up way, and that the care and treatment happens in the community where possible rather than by admission to a hospital.

Click to read more about the NHS Long Term Plan

The feedback you give to ESPCF will help inform what is offered to families in East Sussex as part of this project. We will produce a report based on your experiences which will be submitted to NHS Sussex to help shape the development of the keyworker service to ensure it is as helpful for families as possible.

This NHS initiative isn’t intended to stop in-patient admissions if that is the best option for the child or young person, but is about trying to improve the commissioning of preventative services and exploring ways to find the best care as close to home as possible.

Further information

We value your time, so are able to offer payment as part of this work. Details to be confirmed.

At this point we are just looking for East Sussex parent carers to get in touch. We can then discuss with you if you think it’s safe or appropriate for your child or young person to be involved too.

Please share this request  with any other parent carers in East Sussex who you think it might be relevant to. Also, if you know of any groups or organisations who could help us to link up with families, that would be very much appreciated.

Contact us
0300 770 1367