Integrated Impact Assessments – Implementation of the Herbert Protocol in Edinburgh

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Final report

1. Title of plan, policy or strategy being assessed

Implementation of Herbert Protocol in Edinburgh.

2. What will change as a result of this proposal?

The Edinburgh Health and Social Care Partnership (EHSCP), Police Scotland, Alzheimer Scotland and Scottish Care are working in partnership to implement the Herbert Protocol across 4 locality areas in Edinburgh by the summer of 2019.

The Herbert Protocol is specifically designed to help Police officers search for people living with a dementia diagnosis, who may be at risk of going missing.

The Herbert Protocol is an information gathering tool that encourages carers and families to record vital information about the person with dementia, on a standardised form. This can be handed to police in the event of someone going missing.

It helps police to quickly access important information, avoiding unnecessary delays in gathering this at a time of crisis. The form records vital information such as where the person grew up, favourite places, former or current hobbies, GP contact details, medication, daily routine, a picture of the person, and includes consent to share this on social media should it be required.

Once complete, the form can be retained by family carers, or placed within the home or care setting in a safe but prominent position, so the information is easily available to police when required.

3. Briefly describe public involvement in this proposal to date and planned

As part of the Edinburgh pre-launch preparation of the Herbert Protocol a draft form and leaflet was shared with a range of service areas to test out with people who have a dementia diagnosis, and those who care for them.

It is important the Herbert Protocol information form and leaflet easily communicates its purpose, and is easy to use for families and staff.

The form was tested with 2 people living with a dementia diagnosis and their carers, additionally 16 people who are caring for someone who has a dementia diagnosis, also helped develop the form.

Feedback from staff and informal carers at this test stage informed further developments of the form and communications planning prior to launch.

This initial feedback was crucial in developing the final version before wider circulation commencing 26th March 2019.

4. Date of IIA:

21 March 2019 (specific actions in section 13 reviewed 20 January 2021)

5. Who was present at the IIA? Identify facilitator, Lead Officer, report writer and any partnership representative present and main stakeholder (e.g. NHS, Council)

Name Job Title Date of IIA Training Email
Karen Thom (facilitator/report writer) Strategic Planning and Commissioning Officer, Edinburgh Health and Social Care Partnership (EHSCP) November 2016 Karen.thom@edinburgh.gov.uk
PC Yocksan Bell Missing Persons Operational Coordinator, Police Scotland Yocksan.Bell@scotland.pnn.police.uk
Rachel Howe Engagement  and Participation Officer, EHSCP Rachel.howe@edinburgh.gov.uk
Laura Elliot Social Worker, North East Locality, EHSCP Laura.elliot@edinburgh.gov.uk
Andy Jones Team Leader, Assistive Technology Enabled Care Services, EHSCP Andy.jones@edinburgh.gov.uk
Tommy Petillo Purple Alert Project Lead, Alzheimer Scotland TPetillo@Alzscot.org

6. Evidence available at the time of the IIA

Evidence Available? Comments: what does the evidence tell you?
Data on populations in need Yes In 2019 it is estimated around 8,492 people are living with dementia in Edinburgh, which includes 313 people under the age of 65 years. This is anticipated to rise in 10 years to 10,943 and in 15 years to 12,605 people (footnote 1).

The recently published Estimated and Projected Diagnosis Rates for Dementia in Scotland:2014 -2020 also confirms continued rising need within the population as risk increases with age.

NHS Health Scotland – Dementia and Equality – Meeting the challenge in Scotland 2016 focused on issues experienced by population groups with protected characteristics under the Equalities Act 2010.

There are key overarching recommendations for promoting equitable dementia services that embed and promote human rights. These are: continue to raise awareness which is fundamental to promoting early diagnosis; ensure robust services and support pathways; ensure appropriate knowledge and skills; further research including impact of culturally competent dementia friendly community approaches and awareness raising; developing Scottish data on incidence and prevalence in relation to people with protected characteristics including homeless people and prisoners.

The Herbert Protocol is designed for people of all ages who have dementia, including people with young onset dementia (diagnosed under age of 65).

Data on service uptake/access Yes From 1 January to 31 December 2018 there were 125 people with dementia diagnosis reported missing (105 individual people)(footnote 2). This accounted for 4.5% of all people reported missing.

Of the 125 people reported missing:

  • 17 reported missing on more than one occasion – 15 reported missing on two occasions, 2 reported missing on 5 occasions.
  • Average time missing (from the time reported to Police) – 1½ hours.
  • 26 people returned to current home address independently, 99 people located elsewhere mostly having been traced by Police or, less frequently, by members of the public (bus drivers, taxi drivers, dog walkers) or family.

It is anticipated that implementation of the Herbert Protocol will have a positive impact as will enable a more coordinated and quicker response in the event of someone with dementia going missing.

Monitoring the uptake of support will be subject to further developments within Herbert Protocol implementation period in Edinburgh.

Data on equality outcomes No This subject to further development and monitoring during implementation, taking account of future national developments.
Research/ literature evidence Yes Scottish Government (June 2017) Scotland’s National Dementia Strategy 2017-2020. Linked to Commitment 16 within the Strategy – We will consider the upcoming recommendations of Police Scotland Missing Persons report for the dementia client group.

Scottish Government (Dec 2016) Estimated and Projected Diagnosis Rates for Dementia in Scotland:2014 -2020 Edinburgh

UK Government (2013 and updated 2015) Equalities Act 2010 Guidance. London

Equality and Human Rights Commission in Scotland

Scottish Government (2016) NHS Health Scotland – Dementia and Equality – Meeting the challenge in Scotland Edinburgh 

Scottish Government (2016) The Carers (Scotland) Act 2016. Edinburgh 

Alzheimer Scotland (2009) Charter of Rights for People with Dementia and Their Carers 2010 Edinburgh 

Scottish Government (2011) Standards of Care for Dementia in Scotland June 2011 Edinburgh

Public/patient/ client experience information Yes As outlined above. To make the necessary improvements to the Herbert Protocol form.

Anticipated positive impact for carers of people at risk of going missing as will provide re-assurance of some forward planning taking place, with essential information gathering in event of this happening. While it will not prevent someone from going missing it is hoped person will be found quicker.

Evidence of inclusive engagement of service users and involvement findings Yes As outlined above. Feedback on Herbert Protocol form and ongoing case history gathering to inform further developments.
Evidence of unmet need Yes Awareness amongst staff and public on use of Herbert Protocol is low. Communications and engagement plan is in place for staff awareness raising from April 2019 and full multi-media launch early June 2019 to raise public awareness and encourage use of form.

Consideration will need to be given to implementation for homeless people, easy read version, storage of forms in obvious place in the home.

Good practice guidelines Development of the Herbert Protocol should meet the principles and standards within the Charter of Rights for People with Dementia and Their Carers 2010, Standards of Care for Dementia in Scotland June 2011
Environmental data Yes The importance of dementia friendly communities to support people living with a dementia diagnosis, awareness raising and dementia training are strongly linked to the Herbert Protocol as outlined in Scotland’s National Dementia Strategy 2017-2020.

Will have neutral impact on geographical areas as equally applies to urban and rural communities in Edinburgh.

Risk from cumulative impacts None noted
Other (please specify) Yes Compliance requirements will relate to The Equality Act 2010 and any successor legislation, advice and best practice guidance issued. It will also regularly involve and consult with people who have a dementia diagnosis and those who support them to inform developments.

Ongoing work and discussions should be equitable across all groups with protected characteristics and include people diagnosed in acute hospital wards, care homes and in employment.

Additional evidence required? No

7. In summary, what impacts were identified and which groups will they affect?

Equality, Health and Wellbeing and Human Rights

Positive

  • The Herbert Protocol is available to all people with protected characteristics, on low income or vulnerable to falling into poverty, refugee/asylum seekers, homeless, those involved the criminal justice system.
  • Alternative communication methods will be promoted to ensure that people who require this can be included and supported appropriately, for example visual impairment, low literacy. This will be detailed in communications and engagement planning and subject to further development during implementation.
  • Promotes participation, inclusion, dignity and control, builds on carer support networks.
  • Affects all staff groups to support using the protocol, by raising awareness to general public/staff, enhance interagency working.
  • Inclusion across people who live at home, and in care settings.

Negative

  • People living alone, with dementia in the community who do not have informal carers to assist with completing the form may be disadvantaged. However, if they have statutory or commissioned care or support, staff would be encouraged to complete the Herbert Protocol.

Affected populations

All people with protected characteristics and wider population groups as identified through IIA.

Environment and Sustainability

Positive

  • Public safety – will raise awareness and support people to minimise risks through information available on Herbert Protocol.
  • Sustainability – community capacity building by raising awareness, impact on lifestyle and partnership working. A person-centred approach to building resilience and supported self-management strategies.
  • Will have neutral impact on geographical areas as equally applies to urban and rural communities in Edinburgh.
  • Will promote best use of Police resources if search and rescue can start sooner as essential information already recorded on Herbert Protocol form. It is known the first hour following someone going missing is the most important in finding someone quickly. More timely response may mean minimise need for extra Police supports such as a helicopter search.
  • Potential to link use of Herbert Protocol form with other support developments such as GPS systems and use of Purple Alert app.
  • Has potential to promote more coordinated risk management and develop more dementia friendly environment that promotes maintaining independence.

Negative

Neutral impact.

Affected populations

All people with protected characteristics and wider population groups as identified through the IIA.

Economic

Positive

No cost to individuals to use or complete form.

Negative

Neutral impact.

Affected populations

All people with protected characteristics and wider population groups as identified through the IIA.

8. Is any part of this policy/ service to be carried out wholly or partly by contractors and how will equality, human rights including children’s rights , environmental and sustainability issues be addressed?

This will link to review of the City of Edinburgh Council Missing Person’s Procedure.

9. Consider how you will communicate information about this policy/ service change to children and young people and those affected by hearing loss, speech impairment, low level literacy or numeracy, learning difficulties or English as a second language? Please provide a summary of the communications plan.

Communications plan will be developed following this IIA by the Herbert Protocol Steering Group.

10. Is the policy a qualifying Policy, Programme or Strategy as defined by The Environmental Impact Assessment (Scotland) Act 2005? (see Section 4)

No.

11. Additional Information and Evidence Required

If further evidence is required, please note how it will be gathered. If appropriate, mark this report as interim and submit updated final report once further evidence has been gathered.

None.

12. Recommendations (these should be drawn from 6 – 11 above)

Follow up actions will be progressed as per the report (see section 13).

13. Specific to this IIA only, what actions have been, or will be, undertaken and by when? Please complete:

Specific actions (as a result of the IIA which may include financial implications, mitigating actions and risks of cumulative impacts) Who will take them forward (name and contact details) Deadline for progressing Review date. Reviewed 20 Jan 2021 – see outcomes below
Develop multi-agency communications and engagement plan for staff and public Rachel Howe, Engagement and Participation Officer, EHSCP

Rachel.howe@edinburgh.gov.uk

Communications Department, Police Scotland

Herbert Protocol Steering Group

Sept 2019 Oct 2020 – completed/ implemented and subject to ongoing promotion
Raise awareness on use of specialist services as required, to assist with form completion for people who require this. For example interpretation services, advocacy, carer, statutory and sensory impairment services. Karen Thom, Strategic Planning and Commissioning Officer, Older People, EHSCP

Karen.thom@edinburgh.gov.uk

Herbert Protocol Steering Group

Ongoing Oct 2020 – ongoing
Promote to minority ethnic groups Herbert Protocol Steering Group Ongoing Oct 2020 – further work to be done – to be progressed more widely
People who are homeless living with dementia. Further exploration of how this may apply and be implemented to support services in this area. Karen Thom

Karen.thom@edinburgh.gov.uk

Herbert Protocol Steering Group

Dec 2019 Oct 2020 – further work to be done
Develop easy read version – develop with FAIR Herbert Protocol Steering Group Dec 2019 Oct 202 – in progress
Explore links further to GPS systems and Purple Alert app Herbert Protocol Steering Group Sept 2019 Oct 2020 – complete

14. How will you monitor how this policy, plan or strategy affects different groups, including people with protected characteristics?

Through continued feedback from people using the forms.

Feedback from service areas – Police Scotland Missing Persons Data; through communications and engagement sessions to promote use of form; case history feedback.

15. Sign off by Head of Service

Tony Duncan's signature

Name Tony Duncan, Head of Strategic Planning,

Edinburgh Health and Social Care Partnership

Date: 20 January 2021