Psychosocial health – a manifesto for action and a campaign for change

Psychosocial care saves lives, yet too many people living with kidney disease are not getting the social and emotional support they need. With experts from the National Psychosocial Working Group, we have developed a manifesto for action.

Research tells us supporting the psychosocial needs of people with kidney disease helps them live longer in much better health, allowing them to enjoy time doing what they love with the people they care about.

Yet, despite the Government’s message of parity of esteem between physical and mental health, there is still wide variation in services. That’s why we are campaigning to ensure the UK government and devolved governments work towards achieving an integrated whole-system approach to the social and emotional wellbeing of everyone living with kidney disease.

In June 2022, we launched the Psychosocial Care Manifesto to the renal healthcare community at the national UK Kidney Week conference.

The term psychosocial is used to refer to the full range of psychological, psychiatric and social care needs.

Download the Psychosocial Care Manifesto

Improvement of the care provided for ALL people living with kidney disease: our 10 key recommendations

Identification of psychosocial care needs

  • Every kidney patient should have their psychosocial care needs assessed using validated methods.

Provision of psychosocial care at all levels of need

  • Every kidney patient should be provided with appropriate psychosocial care that fully supports their level of need, as part of their standard NHS care.
  • Psychosocial care interventions should increase with a person’s level of need.

Integration of kidney patient care

  • Psychosocial care needs should be integrated into kidney patient care plans (which are produced by a patient’s hospital kidney team).
  • New NHS Integrated Care Systems should ensure different parts of the system are better joined-up to support the psychosocial care needs of people with kidney disease, as well as their physical health.
  • Renal multidisciplinary teams (MDTs) should integrate renal specialist psychology, counselling, social work and psychiatry to ensure kidney patients have access to all of the support they need to help them manage their condition and the complex interactions between mental and physical health.

Psychosocial care workforce needs

  • Staffing levels should be monitored to support access and equality to psychosocial care.
  • All renal staff should receive training in the mental health needs of patients so that they are able to act as “first responders” and know who and where to refer patients. Mental health staff should receive training about renal disease screening and management for their patients with severe mental illness and dementia.

Accountability and reporting

  • Minimum national standards of psychosocial care should be introduced and monitored so all patients receive equal access to the care they need, no matter where they are in the country.
  • A dashboard should be created to monitor the success of psychosocial care services in improving kidney patient health.
Download the Psychosocial Care Manifesto Recommendations

Join us to campaign for better psychosocial support

Since summer 2022 the Psychosocial Care Manifesto has been shared around the country, from Scotland to Wales and across England and in Northern Ireland.

We’ve presented the Psychosocial Care Manifesto at the Scottish Renal Association, to the Association of Renal Nurses, to the London Kidney, Midlands and South East renal networks and taken it to the other networks in England. The networks are responsible for improving access, quality, outcomes, value and experience in kidney care in England. We’ve shared it with NHS England and of course with people with kidney disease.

Through our work, psychosocial support will feature in the new toolkits for NHS England kidney services, though the details of how this work will be funded and rolled out are not yet clear.

Everyone has said that this work is needed and that people with kidney disease should be offered support. Now is the time to keep up the momentum and press on even harder with this work.

Psychosocial Care Manifesto: what are we asking for

We want everyone with kidney disease to have the opportunity for a check-up on their social and emotional wellbeing, at diagnosis and then regularly.

We would like to see how much psychosocial support is available across the units, and everyone to know that help is available for them, and how to get it – including signposting to Kidney Care UK patient support services.

But we don’t and can’t replace the NHS (we don’t receive any government funding for our work) so we are asking that staff are assisted and trained to support the social and emotional needs of people with kidney disease.

Declining resources, rising demand

A chronic kidney disease diagnosis can have a significant impact on all aspects of a person’s life, particularly their emotional wellbeing and mental health.

Over the past 15 years, adult renal social work resources have reduced dramatically, by nearly a fifth (19%), despite increasing numbers of patients. With nearly half (49.3%) of all renal units operating without any adult renal social workers there is a clear and pressing need for improvement. It’s vital this downward trend in support is reversed.

Psychosocial support for kidney patients: time for action

The Psychosocial Care Manifesto is a ‘National Call to Action’ for all patients, their families, friends and healthcare teams to join together to demand equal access to the highest quality, timely and renal specialist psychosocial care.

It sets out 10 clear recommendations aimed at achieving an integrated whole-system approach to the care a person living with kidney disease should receive.

We can't achieve real change without you – please join the campaign

Working together we will continue to ensure our politicians in national and devolved government hear the voices of kidney patients and work towards improving care to meet their psychological and social needs. Our manifesto includes ideas and opportunities for you to join us to make the case for real change for people affected by kidney disease. By joining us and taking action, you can help achieve that change.

Kidney patient and Psychosocial Care Manifesto supporter Belinda Otas talks about her journey and the importance of psychosocial support when navigating the difficulties of long-term conditions in her blog, Living with a long-term health condition: a journey of one day at a time.

If you are a healthcare professional or Kidney Patient Association, ask your local network leaders what their response is to the recommendations contained within the manifesto for improving psychosocial care.

To be part of our Psychosocial Campaign Group email us on [email protected].