We Are Family

We Are Family showcases the value of Dementia Care Matters' 'Feelings Matter Most' philosophy for people living with dementia, which recognises that people living with a dementia are more feeling beings than thinking beings.

Filmed at Landermeads Nursing Home, in Nottingham, UK, the film shows how the Butterfly Household Model of Care identifies that quality dementia care is all about the beauty of the moment and sharing and celebrating life:


Implementing John’s Campaign during the COVID-19 pandemic - An inclusivity improvement story

by Dianne Smith

Matron for Dementia, University Hospitals of Morecambe Bay Trust 

What change did you make?

We have offered, and continue to offer, John's Campaign throughout the COVID-19 pandemic.

John's Campaign was established to promote 'the right to stay with people with dementia' and 'the right of people with dementia to be supported by their family carers' - that carers should not just be ‘allowed’ but should be welcomed in hospital settings. 

What happened as a result of the change? What impact did it have on patient care?

Patients with dementia who were disorientated, unsettled, unable to articulate their needs, who needed advocate support from a family member, were still able to receive it. We needed to make some adjustments to the scheme by limiting numbers to one family member only to attend, and they needed to adhere to infection prevention protocols and produce a negative lateral flow test before arrival to the ward. 

What did you learn?

Sometimes it is about identifying and prioritising risks to patients. Patients with dementia are so vulnerable in hospital, and need the stability of support from a carer to help them with day-to-day care needs and decision making. When visiting stopped, we recognised that the scheme was missed for both patients and their carers/family. 

We needed to be really clear on what was acceptable, and what limitations needed to be in place to also minimise the risk of covid spreading with other patients and staff. Hence the production of the Standard Operating Procedure, produced by Patient Experience and the Matron for Dementia.

How are you making the change stick?

The Standard Operating Procedure has been developed and communicated well throughout the Trust, and is in use in every clinical area in both inpatients and outpatients, both planned and emergency admissions. 

We need to have clear boundaries to adhere to with application of the Standard Operating Procedure from a covid perspective, as we also need to keep patients and staff safe from covid risk. 

What else would you like to share?

People with dementia will always struggle to articulate their needs, make decisions about care and treatment, and understand what is happening when coming into hospital for any appointment, planned treatment or acute admission in an emergency. 

Family members/carers are usually experts in that person's individual care needs, and know the person's limitations. It is therefore fundamental that they are with them as much as possible to help, reassure and contribute to decision making with the person with dementia. 

We provide the family member/carer with a lanyard to visit with, which gives them the visible permission to be there. 


Musician living with dementia writes song for research project - A Brave New World

A musician who has dementia has written an uplifting song to help support others living with the condition, as part of a major research project:

The IDEAL Programme – Improving the experience of Dementia and Enhancing Active Life – is an Alzheimer’s Society Centre of Excellence based at the University of Exeter. Led by Professor Linda Clare, a team of researchers have been working with a large number of people with dementia and carers living in the community to understand which things make a difference to the ability to live well with dementia.

Read more here...

Kate Holliday

Quality Improvement Manager, Deputy LAC LeDeR Programme / Freedom To Speak Up Guardian

NHS North Cumbria Clinical Commissioning Group (CCG)


What change did you make?

Annual Health Checks for people with learning disabilities, which result in the production of Health Action Plans, are incredibly important. A Health Action Plan identifies an individual’s health needs, what will happen about these needs, who will help, and when this will be reviewed. They ensure those with learning disabilities are receiving the very best care, and also help us to address health inequalities. It also summarises what was discussed and any other relevant information (e.g. what is important to the person, what their goals or outcomes are that they want to achieve). 

Reviews which had taken place locally highlighted a lack of use of the Health Action Plan for people with learning disabilities. So in response to this, a project took place to increase the uptake of Annual Health Checks, as well as review and improve the national Health Action Plan in EMIS (the electronic patient record system GP practices use). 

A key ambition of the project was to improve the quality of the Health Action Plan output in terms of making it more holistic and user friendly, easier to complete, and more visual for users. A multi-partner task and finish group was established to review the national Health Action Plan template, and suggestions were made on ways this could be modified. Representation on this group included CCG Learning Disability Lead GP, Specialist Nurses from the Physical Health Team in the Community Learning Disability Team, Primary Care Network Learning Disability Nurse, PRIMIS Informatics Facilitator, and CCG Quality Improvement Manager. This work was co-produced with our local learning disability advocacy group, as well as with a group of young people and their families and carers. 

What happened as a result of the change? What impact did it have on patient care?

As a result of the project, Health Action Plans for people with learning disabilities are now more meaningful to both users and clinicians alike. The plan benefits the individuals, and includes things like goal setting to ultimately improve their health. 

There has been a reduction in time taken by clinicians to produce and populate a Health Action Plan when compared with the previous EMIS template, which has led to more of these being completed. 

On the whole, the individuals now have a more holistic assessment, with a more user-friendly document. It is easier for health professionals to undertake the Annual Health Check and Health Action Plan, as the information automatically populates from the patient record:

How are you making the change stick?

This project can be replicated, and the plan is to roll this out to all of our local GP practices and across the Integrated Care System in the very near future.

‘Teach it forward’! If you would like more information on this improvement, please contact:

Kate Holliday - k.holliday@nhs.net 

A West Yorkshire and Harrogate review report to tackle health inequalities for minority ethnic communities and colleagues: Understanding impact, reducing inequalities, supporting recovery...

Everyone deserves the same opportunities to lead a healthy life, no matter where they live or who they are. Yet, evidence shows that people from ethnic minority communities continue to face health inequalities, discrimination in the workplace and are more likely to develop coronavirus (COVID-19) and die as a result of it.

This review specifically aimed to understand this impact on ethnic minority communities and staff. The aim was to review existing work, to explore if this work was sufficient to address this impact and to identify recommendations for action to reduce this impact:

Visit the West Yorkshire Health and Care Partnership website to read the report, panel papers, case studies, personal reflections, and view more of the films that are available...

In this video we hear from Kate Holliday (Deputy Local Area Contact for the LeDeR Programme, NHS North Cumbria CCG), Cathy Mellstrom (Team Leader for Self-Advocacy Work, People First), and Lou Townson (Co-Chair of the LeDeR Confirm & Challenge Group / Trustee of People First). 

They describe the work that went into co-producing the 2020/21 LeDeR Annual Report, as well as the importance of involving people with lived experience when we want to make improvements and ultimately achieve high quality outcomes.

Teach it forward! If you would like to know more about the LeDeR Programme and Annual Report, please contact Kate Holliday: k.holliday@nhs.net