Improving healthcare by involving carers

As NHS England publishes a new toolkit about how to involve carers of people in secure mental health services Neil Churchill, Director for Participation and Experience, reflects on the challenges faced by carers and the important part they play in the NHS.

There are five and a half million carers in England, with many of us expected to take on caring responsibility at some point in our lives and yet we don’t always appreciate the contribution family carers make or the impact they have on their loved ones’ health and wellbeing. Carers can offer a unique perspective on health services and they have a wealth of experience and knowledge about the person they care for. In light of this, the NHS Five Year Forward View committed to find new ways to support and empower carers, including those who are most vulnerable.

We have worked hard to improve the support all carers receive from the NHS, including earlier identification of individuals. Yet carers of people in secure mental health services have often been overlooked. They face a wide-range of issues that affect both the person they care for and themselves. Many have themselves dealt with trauma and distress. They may have been the victim of a loved one’s behaviour, experienced the criminal justice system and perhaps even been the subject of stories in the press – all while dealing with the impact of a mental health crisis.

When the person they care for is in secure services, many carers have reported not feeling valued or listened to by healthcare professionals, despite the knowledge they hold about the person being treated. Some carers have told us that they have not been involved in the care of the person in secure services and that they had to fight for the right services and information.

This feedback is the reason we worked with carers to develop this toolkit for commissioners, staff, providers and carers themselves.

We know that carers play a key role in helping people to get better; they know so much about the person being cared for, and what can help them recover.

They can help us to see the things we don’t see; see things that are really important, and help us to start from the right place. More effective care and recovery not only benefits patients and their carers, it also delivers more efficient uses of resources, helping to ease pressures on the health services.

We worked with carers to understand more about the experience and knowledge they can bring to improve services and care. We also looked at examples of where practice is changing and carers are being involved in service design and delivery. Partners, including the University of Central Lancashire and The Royal College of Psychiatrists, helped to develop the toolkit and ensure that it empowers carers and helps to change practice in secure mental health services.

NHS England’s Commitment to Carers applies equally to carers of people in secure mental health service as to other carers. The healthcare system needs to involve all carers in services; after all they will be the ones who continue to offer vital support and encouragement to patients, helping to bring people back into better health and back into their communities.

Dr Neil Churchill

Neil is Director for People and Communities at NHS England, having joined the NHS after a 25-year career in the voluntary sector. His work includes understanding people’s experiences of the NHS, involving people and communities in decision-making and leading change to improve the quality and equality of care. He has a particular focus on strengthening partnerships with unpaid carers, volunteers and the voluntary sector.

Neil has previously been a non-executive director for the NHS in the South of England, is a member of the Strategy Board for the Beryl Institute and Chair of Care for the Carers in East Sussex. He is himself an unpaid carer. Neil tweets as @neilgchurchill

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    Improving health care by involving carers is very very important and I am glad this is being addressed.
    But so far from my limited experience some G.P.’s
    do not seem aware or know how to go about properly supporting carers with e.g. an adult with mental ill health. My feeling is they hide behind confidentiality or do not know what to do. So offer the carer medication and/or pass you onto another service. Other services although well meaning say your son or daughter has to refer themselves as they are an adult. Have other people experienced what I have it would be interesting to know then maybe carers can support each other to find a way forward. Look forward to your views and experiences.

  2. Jo Hough says:

    Speaking as another family carer, an updated and loudly relaunched document would be welcome – as would a similar set of commitments from Local authorities (perhaps the LGA could support this?), in order to enable more integrated working between health and social care providers, and unpaid carers.

  3. Francesco Santino Palma says:

    Prefer this Easy Read

    Putting MCA 2005 to one side,This toolkit should clearly show that if the patient does not give valid informed consent then Confidentiality is assured by GDPA 2018,Healthcare Professionals are bound by their Code, NHS Constitution & NHS Trusts are Data Controller.

    Now NHS Trusts can support Carers as informed in the toolkit which is informative and clear except for the above.
    For Mental Health it is advisable to have advance statement/directive/decision that can cover consent to cover information.
    As a Parent & Nearest Relative & my son’s consent on the advance directive we were able to share and provide support and be kept informed without consent that may have proved to be difficult.

    Unrelated to the above, on the past four occasions that I have made comments on here no response, please pass on.

    • NHS England says:

      Thank you for your comments on the toolkit Francesco, we will feed these back to members of the steering group who were involved in its development . We will also make sure we update the toolkit to make reference to the General Data Protection Regulation 2018.

      On page 20 of the toolkit we highlight some of the issues around confidentiality and consent. This section came about as carers told us that healthcare professionals were very aware of their responsibilities around confidentiality/consent, but this meant that they sometimes were unwilling to share general information (that wasn’t confidential), and as a result families received little or no information. This section of the toolkit aims to highlight that confidentiality is very important, however staff should understand that people’s wishes around consent can change over time and confidentiality is not a reason to exclude carers.

      If you have any other feedback you would like to give to the steering group on the toolkit please drop us a line at