Frailty – What Matters to People Living with Frailty

Lead: Citywide

Period: 1st Apr 2018 - 14th May 2018

Frailty is a term used by professionals to describe the loss of body resilience, which means that in the case of a physical or mental illness, an accident or other stressful event, people living with frailty will not bounce back quickly.

Frailty is related to the ageing process; not all older people are frail and not all individuals living with frailty are older. More about Frailty can be found here: www.england.nhs.uk/ourwork/ltc-op-eolc/older-people/frailty/

 

Brief summary of the project

Commissioners in Leeds are changing the way we plan and pay for health services. We are working with our partners such as Leeds City Council, providers and the third sector to move away from paying for activity (such as number of hip operations carried out) and to focus more on outcomes (what difference the activity actually makes to the individual and their carer). This means that instead of paying service providers, like the hospital, every time they carry out an intervention/activity, the commissioners will be paying them based on what the patients thought of the outcomes. We are hoping that this will help people live healthier, happier and more active lives.

The aim of the engagement was to understand what matters to people living with frailty, those at end of life and their carers.

Who did we speak to?

We spoke to 134 people, out of which 96 were people living with frailty and 38 were cares.

 

What did we ask?

We asked people:

  • what do they think about the word ‘frailty’?
  • what matters to them?

How did we ask?

We worked with our citywide partners to plan our engagement. We involved 14 voluntary sector organisations and 2 care homes to identify and engage with people.

We used focus groups and semi structured interviews to engage with people.

To understand what matters to people at end of life and their carers we also used existing data collected by partner organisations through a city wide bereavement survey.

What did people tell us?

People had mixed views on the word ‘frailty’. The carers we spoke to generally found the word helpful, however many people living with frailty told us that the word had negative connotations.

 What matters to people we spoke to?

  • being socially connected
  • being able to do the things they enjoy and look after themselves
  • staying active and healthy
  • receiving good healthcare
  • being independent
  • being in control over their daily life

For more information, please refer to the engagement report below.

What did we do with the feedback?

We want to use the feedback from the engagement along with other patient experience information to identify a tool that measures the outcomes of care from an individual perspective.

We worked with our partners and patient volunteers to develop a series of recommendations based on feedback from the engagement. The table below outlines the progress we have made to date.

Recommendations
(you said)

What have we done/are we doing to implement this?
(we did)

1. Be mindful of using the word ‘frailty’ with people who are frail. Through our ‘better conversations’ work (www.betterconversation.co.uk/) we are training staff to avoid talking about frailty and instead talk to people about what is going well for them and how they can make sure those things can continue for as long as possible.
2. Develop a ‘what matters’ tool for people living with frailty that measures people’s:

a. Feelings of being socially connected
b. Ability to do the things they enjoy
c.  Experience of using healthcare services, in particular whether they feel they have been listened to and treated with dignity
d. Independence
e. Access to transport

Following the engagement we look to see if there was an existing validated tool we could use that would capture the things people told us were important to them. We don’t think that there is anything currently available which will capture the things people highlighted as important in our engagement. We are in the process of developing a bespoke tool to measure people’s experiences. This will take some time to achieve and we will continue to involve local people and our partners as we develop the tool.
3. Develop a ‘what matters’ tool for people who care for people with frailty that measures people’s:

a. Feelings of being socially connected
b. Ability to do the things they enjoy
c. Experience of using healthcare services, in particular whether they feel they have been listened to and treated with dignity
d. Ability to look after their own needs
e. Access to respite
f.  Access to transport

We are in the process of developing a bespoke tool to measure people’s experiences. This will take some time to achieve and we will continue to involve local people and our partners as we develop the tool.
4. Develop a ‘what matters’ tool for people at end-of-life that measures:

a. People’s experience of care
b. How people’s wishes are taken in consideration
c. Privacy
d. Choice in where people die
e. People’s views on the availability and relevance of information provided

We are in the process of developing a bespoke tool to measure people’s experiences. This will take some time to achieve and we will continue to involve local people and our partners as we develop the tool.
5. Be mindful of the specific needs of seldom heard groups, in particular about providing accessible information and appointments We are continuing to work with our voluntary sector colleagues to ensure that we understand the needs and preferences of seldom heard groups. We are also committed to developing information that meets the requirements of the Accessible information Standard: www.england.nhs.uk/wp-content/uploads/2017/10/easy-read-accessible-info-standard-overview-2017-18.pdf 
6. Be mindful of the value of the third sector in engaging with frail people, people at the end of life and their carers The third sector have been a valued member of the Commissioning for Outcomes Framework Reference Group since it began in 2017.
We understand that working in partnership with our third sector colleagues is essential if we are to develop person-centred health services in Leeds.

 

If you have any questions about this engagement please contact Andra Szabo on andra.szabo@nhs.net or 0113 84 35442.

 

Documents

Engagement report – Frailty (1,119 KB)

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Engagement Plan – Frailty (611KB)

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Facilitator guidance for focus groups(464KG)

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