Shared learning database

HealthWatch West Sussex & The Disabilities Trust
Published date:
December 2020

Rachel Priestly, Service Manager, The Disabilities Trust and Cheryl Berry, Healthwatch West Sussex worked in partnership to develop the Best Interest Discussion Making Toolkit.

This followed discussions and a shared concern that health and care professionals were not structuring their conversations with individuals who lacked capacity in some decision-making, leading to poor health and wellbeing outcomes. The lack of recording of discussions also meant that others failed to understand what would enable better outcomes and so poor treatment approaches were evident.

The aim of the project was to support healthcare professionals: health, social care, and community - who work with people who have cognitive impairment and where capacity fluctuates.

The Toolkit is used to structure, record, and evidence how a healthcare professional has worked in the best interest of a person and provides a paper trail. Currently there is no uniform guidance/process used. The toolkit demonstrates how to implement in practice, recommendations from NICE guidance NG108: Decision making and mental capacity.

The toolkit and associated materials can be accessed on Healthwatch West Sussex's website here.

Guidance the shared learning relates to:
Does the example relate to a general implementation of all NICE guidance?
Does the example relate to a specific implementation of a specific piece of NICE guidance?


Aims and objectives

People with learning disabilities and cognitive impairments sometimes lack capacity to make decisions pertaining to their health and wellbeing. The Mental Capacity Act ensures that people are treated fairly when making decisions about their lives. Staff supporting people to make those decisions try to make the process as easy as possible. Firstly, by identifying what the decision is that needs to be made and confirming if the person has capacity to make an appropriate decision. In many situations the person may not have the capacity to make these decisions and needs people to make decisions on their behalf. This process is called best interest discussions and includes a range of people working in their best interests.

When it comes to making decisions about healthcare for example to have a medical procedure, this needs to go through this process. In order for it to be a fair and transparent process the toolkit enables people working on their behalf to design and track the thinking behind the final decision.

Within West Sussex we have many people in a variety of settings needing to make difficult and complex decisions about their health care. Staff supporting people can struggle with the Mental Capacity Act legislation and this toolkit makes it easier as it records and evidences how a healthcare professional has worked in the best interest of the person and provides a paper trail. This demonstrates  how to implement NICE NG108, recommendation 1.1.

The Mental Capacity Act 2005 states that one must; presume capacity in the first instance until proven otherwise. Within the toolkit there is a 'Easy Read' capacity assessment which can be adapted to the individual’s communication needs. This demonstrates how to implement NICE NG108, recommendation 1.2.

The best interest process must involve all involved in that person’s life. If there is no one other than a healthcare professional to support the decision, then an Independent Mental Capacity Advocate (IMCA) may be required. The overall decision on the required treatment, medication or procedure lies with the healthcare professional who proposed the treatment.

The Toolkit contains documents to help support the decision maker and all involved in the best interest outcome. The toolkit provides a paper trail evidence of the process agreed and who was involved in this decision. This demonstrates how to implement NICE guidance NG108, recommendation 1.2.17.

The toolkit helps provide a framework, to ensure that a person’s journey within health is appropriate, supportive, and smooth. This demonstrates how to implement NICE guidance NG108, page 24 around the recording of outcomes.

Reasons for implementing your project

The need for the development of the toolkit arose from personal experience of using the Mental Capacity Act guidance. Staff at The Disabilities Trust found the application of the Act varied from healthcare professional and settings and there was no record of conversations and decisions. This was confusing for service users, parents, carers, and staff. Staff requested that specific tools was needed to support the process for the individual, their parents, carers, and evidence as to how staff had supported the process. We also learnt through our presentations that there were many people in a variety of settings needing to support someone to make difficult and complex decisions about health care.

A desk top review was undertaken to check if any resources had already been developed. This found only a capacity assessment tool. We held a discussion session with service users living with various cognitive impairments (25-35 years) and staff in assisted living provided by The Disabilities Trust. This helped to understand what the main issues were, confusion of who makes the decision, support needed for the individual, parents and carers and evidence of actions taken to enable staff to support the individual. From this a patient case study was developed and used to promote the Toolkit.

Once the toolkit had been developed, it was tested with service users and staff from The Disabilities Trust to ensure the content was easy to use and had the right information. Recommended amendments were made, and the Tools were then reviewed and tested by a psychologist from The Disabilities Trust.

The toolkit had a soft launched on both our websites.  We promoted and presented at Learning Disabilities Forums, Self-care Forums, Skills for Care, Healthwatch England Facebook workplace page to inform all 150 Healthwatch teams, presentation at Healthwatch England Conference, etc. As an opportunity to explain the toolkit and to share the tools. This also enabled us to answer any questions raised.

How did you implement the project

Throughout the development of the toolkit we spoke with people who live with cognitive impairments and support staff to capture their views. We tested the easy read capacity assessment tool with people who live with cognitive impairment and support staff from The Disabilities Trust.

The development of the Best Interest Tools has been tested by a psychologist from The Disabilities Trust as well as with people who lacked capacity. Since the launch the toolkit - which is provided ‘free of charge’ to anyone who wishes to access the tools - we have been informed that other organisations health and social care have found the tools useful. One care organisation shared that they use the toolkit to support people by telephone and it has moved conversations on that had been challenging over the previous two years.

The Disabilities Trust is national, and the toolkit has been promoted and presented at the national Healthwatch England conference and website.

The toolkit is currently being used by community, primary and secondary care staff. The toolkit provides a trail of who has been involved in the decision as part of the decision-making process and mental capacity. Our aim was to ensure the toolkit was in line with the Acts, NG108 and NHS thinking:

1) The Right Treatment


2) The Right Medical professional


3) The Right process


4) The Right outcome.

The project did not incur costs as The Disabilities Trust and Healthwatch West Sussex work collaboratively to improve the lives of vulnerable people and invested existing resources in the development, as it was so needed.

The toolkit was launched as a soft approach through both our websites. The local presentations referenced the NICE guidance – Decision making and mental capacity (NG108). Presentations have been made to West Sussex Learning Disabilities Forum, West Sussex Care Home Forums, Skills for Care West Sussex, Healthwatch England Conference, and others. At all presentations, the toolkit has been well received.

Key findings

The collaboration aims and objective was the development of the toolkit, which has been achieved. The documents are jointly owned, and we plan to review on a regular basis, if the Acts are amended and every 18 to 24 months.

The promotion for the toolkit was a soft approach through our websites. The last report stated 165 people had accessed the toolkit by October 2019 and presentations. The toolkit is provided ‘free of charge’ as our aim was to make a difference in the lives of vulnerable people. We believe the Toolkit, when used does this.

Some of the feedback we received from presentations: -

  • The tools enable us to support people to make the decisions within legislative framework.
  • Need for more guidance on how to use the templates – good to hear that e-learning is being planned to support this.
  • Needs to be a statement that clarifies who is the decision maker, especially in any medical treatment.
  • “You came to speak at the WSPiC last week about the toolkit. I went back and used the tools with a someone who had a dental issue and the tools worked really well. Then a couple of days later someone called into the centre and I used the toolkit and followed the questions, again worked really well. The toolkit is now part of our information pack and all staff are using it. Thank you for coming along to talk about the pack and for helping our practice. We now have a record of the decisions we make and are also able to support better by telephone as well as face to face.”

The toolkit also makes life simpler for healthcare professionals as the tools are easy to use and prevents unnecessary treatments and admissions – the right treatment, by the right medical professional, through the right process for the right outcome, as stated in NICE guidance NG108.

We are working with West Sussex County Council learning team to develop a website learning module.

Key learning points

Our key learning is that the toolkit would have reached a wider audience if there had been a more formal launch.

It may have helped if we had been able to work with a consultant on this piece of work to give more credibility in health professional circles.

In the future, we will seek early endorsement by the Sussex Integrated Care Partnership and other key bodies, such as the Care Quality Commission, NHS England and Improvement etc, to achieve a greater chance of early adoption.

Contact details

Cheryl Berry
Community Partnership Lead
HealthWatch West Sussex & The Disabilities Trust

Health and Social Care
Is the example industry-sponsored in any way?