Post-diagnostic Support in Primary Care and Care Co-ordination Knowledge Exchange Lynn Flannigan / Julie Miller (Focus on Dementia) Amy Beck (NHS & ) Clare Serginson ( HSCP) Becki Ballard (NHS ) #Focusonnetworking Brenda Friel ( HSCP)

Enabling health and social care improvement PDS in Primary Care

Scottish Government commission to Focus on Dementia Commitment 2 of DS3

3 year ‘innovation site’ programme until September 2020 . Nithsdale . Shetland . East Edinburgh. Programme aim

To improve the accessibility and delivery of PDS, Commitment 2 of ’s third dementia strategy laid out the aim to explore whether relocation of dementia expertise into primary care will make dementia support more accessible and “normalised” to individuals and families.

Innovating to fit local context……. Post Diagnostic Support in Primary Care

Amy Beck Performance Lead Nithsdale

Enabling Health and Social Care Improvement Project Aim

By the end of September 2020, 80% of people newly diagnosed with Dementia in Nithsdale cluster catchment area, who take up the offer of PDS, will have their PDS delivered in Primary Care. New Pathway What Has Gone Well

Average wait from Dementia Practitioner (DP) referral to diagnosis, Gillbrae Medical Practice, pre and post introduction of revised • Reduction in pre-diagnostic pathway (excluding people referred for CT scan), GP appointments April'18 - Jan'20 60 • Increase in the number of people who can be 50 diagnosed by a Consultant

40 Psychiatrist

30 • Increase in the number of people diagnosed and 20 Numberweeks of supported Introduction of new pathway 10 • Reduction in waits for diagnosis 0 • Reduction in waits to see a Date of DP Appointment Dumfries CMHT CMHN What’s Next

• Phase 2 – Improve access to good quality PDS • Collaborative working with Alzheimer Scotland • Stabilise Phase 1 – Improve access to diagnosis and Phase 2 • Performance Programme Officer will commence post next month • Begin roll out of Phase 1 to the Locality Reflections

• Single Practitioner Model

• Dementia Practitioners are from within existing resources

• Dedicated Psychiatry Time

• Support from MH Directorate and the Board Contact Details

Amy Beck Performance Lead [email protected]

Rachel Widdowson Performance Programme Officer [email protected]

Lynda Forrest Performance Manager [email protected] PDS in Primary Care Shetland

Clare Serginson Lead for Community OT Shetland HSCP

Enabling health and social care improvement Progress update

Our model of PDS – integrated into Community Occupational Therapy Successes and key findings. Challenges and barriers. Next steps.

Any questions? Core Model: PDS integrated in Community OT

Remote and small population of 23,000 Environment/ Geography Dementia Register 220 The front door for Health and Social Care in Shetland

Service User Integrated Feedback Primary Care Key The PDS practitioner supported by Drivers the self management/enabling models of OT and the profile of the profession.

Created an opportunity to develop Connecting People, new therapeutic interventions for Service Audit Connecting those with dementia in OT = Support HBMR pathway Audit and Ketso Focus Group 2018

Audit Results: 21 staff and 41 clients. A hidden service with little evidence of outcomes. What type of PDS do you want? Only 31% of individuals had a ACP • Reliable recorded. • Flexible – timing, support 35.7% of individuals had no PDS offered updates recorded. • Responsive - to the individual nature of the dementia experience Pathway

Referrals: DAS Primary Route • We accept self-referral or GPs referrals from family/carer dependent on consent • Average 5 referrals per month Supported and Social over the baseline year accessed by PDS these services Care • Only 1 referral has come from outside of DAS – via OT 3rd HBMR Sector OT Successes

• 92 individuals living with dementia & their carers have been supported “I have the opportunity to get • 75% increase in uptake things off my chest and get support from other services. • Average wait GP referral to diagnosis Your service seems to be the is 20 weeks main one who supports us and • Average wait referral to PDS to first frequently phones. You’ve contact is 25 days given me confidence to call • The PDS Practitioner is now an social work or other established permanent role in OT community care resources that I wouldn’t have done • Providing a PDS service the individuals previously”. want Challenges:

– Differing systems – SC Vs Health – Getting Health Centre Staff to the table – Funding for the future – Responding to changes in staffing in a small community Next steps

• Employing a PDS Practitioner for maternity cover – March 2020 Ensuring • Training further OT staff in HBMR – April 2020 Continuity

• Continuing to use the Quality Improvement Framework Audit • Repeat Evaluation questionnaire – May 2020 Ensuring • Repeat Service Audit – March 2020 Quality

• Creating presence on SIC website – June 2020 Shaping the future Any questions?

Contacts: Enabling health and [email protected] social care improvement PDS in Primary Care East Edinburgh

Becki Ballard Project Manager East Edinburgh Cluster

Enabling health and social care improvement Dementia & Memory Support in general practice

East Edinburgh GP Cluster Dementia & Memory Support in general practice

Key Aims:

• Create a systematic approach to providing PDS for people newly diagnosed with dementia so no one falls through gaps

• Provide support to people with MCI via GP referral Dementia & Memory Support in general practice Key achievements: • DSF Role • Support patients at all 8 practices in Cluster • Everyone newly diagnosed is accounted for – GP lists and referrals • 188 people reviewed by DSF (out of total 391), with approx 62% taking up PDS • 90% say the Service has helped them ‘A lot’ • Time to first meaningful contact (list or referred) is currently 21 days & 6 days for MCI • 81% of MCI referrals go onto receive a diagnosis for dementia • Notes on practice system, incl. KIS & plan, which all staff see • 5 group work programmes run – collaborative • Range of training delivered eg age simulation, AWI, informed • Workbook Dementia and Memory Support - Personal Plan

Name: Michael Brown CHI: XXP4887 Surgery: Portobello Medical Practice Preferred GP: Dr Finn Date: 15/08/2018

Life Story Identity/Values & Dementia diagnosis & Dementia Medication Interests Understanding of Illness Born and raised in Edinburgh, Memantine lived most of his life in Granton He used to be very Alzheimer’s. Little insight into diagnosis. before moving to Portobello 2 social but that has Environment years ago. Worked in a changed a bit since his befriending service that diagnosis. He still sees Lives with wife. Safe, Carer Needs promoted social events within the value in clutter-free home the community. He is now maintaining social His wife is managing environment. Have retired. Has one daughter who relationships. He well at the moment. discussed possible lives just 5 minutes away and is enjoyed driving but She is supported by her home adjustments for very supportive. has given that up now. daughter and sister. I the future and has also referred her to been seen by an OT. Vocal on 15/08/2018 for future support.

Health – physical (incl daily Current Additional Key Information, incl Future Wishes living), mental, emotional Strengths Difficulties POA for Welfare & Finances held by his wife Jean Independent with personal Enjoys the Poor care Farmer company of memory I have requested a Social Care assessment, Struggles with performing other which affects every day tasks such as appointment on 02/10/2018 people activities of I have referred him to Cottage Club day centre, he cooking (his wife needs to Acceptant daily living remind him to eat) now attends on Fridays of support Poor balance Preferred place of care is his own home Struggles with his balance, and advice notified GP regarding; no other emotional or mental issues

Final Review Date: Service End Date: Dementia & Memory Support in general practice Areas to further develop

• Refining Service • Training Programme • Resources • Advising on local Pathway • Future funding Dementia & Memory Support in general practice Lessons – what helps • Regular Steering Group - good representation • Committed Cluster Quality Lead - giving direct link to GPs • Dedicated Project Manager with experience of setting up such services • IT support in GP practices • Experienced DSF Dementia & Memory Support in general practice

Lessons – what hinders • 8 practices • When I.T. doesn’t work • HR • Lack of practical support eg graphics, admin • Local Pathway • Financial uncertainty Dementia & Memory Support in general practice

Feedback • Pointed me in the right direction • Everyone has been very helpful and very much appreciated. Thank you. • Helped me in the role I now have caring for my mother. • There did seem to be quite a lot of information available and it was helpful and time saving and saved a great deal of physical effort on my part when I was at a low ebb. • Very handy to be based locally • The support given has been great in helping to understand my Mum’s illness. The groups are great. • Knowing this service is based at the GP gives the feeling of local support • Not having to go through the Social Work to speak to someone local who has knowledge and is there to help and advise and find out information that can be useful and beneficial, makes if very informative and easy! • Knowing someone is there if and when needed! Knowing there is help – care, clubs, meals - takes some of the pressure off •It has been good to have someone to talk to. We are sorry it is not for longer, it seems a shame. Care Co-ordination

• In 2012 Alzheimer Scotland developed the 8 Pillars Model • Tested in 5 HSCPs across Scotland as part of DS2 • Scottish Government commission to Focus on Dementia Commitment 4 of DS3:

. Review of literature . Appreciate Inquiry . 2 year programme until March 2021 – Inverclyde HSCP Care co-ordination

Care co-ordination can mean different things to different people. It is a broad and relatively ill-defined concept. It is also under- researched. WHO definition:

“a proactive approach to bringing together care professionals and providers to meet the needs of service users to ensure that they receive integrated, person-focused care across various settings”. Practices associated with care co-ordination • Continuity with a primary care professional • Collaborative planning of care and shared decision-making • Case management for people with complex needs • Collocated services or a single point of access • Transitional or intermediate care • Comprehensive care along the entire pathway • Technology to support continuity and care coordination • Building workforce capability in delivering continuity and care coordination Some evidence of outcomes

• High continuity means 13% fewer hospital admissions • High continuity means 27% fewer visits to an emergency department • 63% Patients who value seeing someone they know and trust • 75% Patients value seeing their usual primary care provider • Coordinated home-based primary care results in 17% lower medical costs • Case management / Advanced care planning at end of life – range of positive outcomes Midlothian appreciative inquiry

• People with dementia use more services than people without • Midlothian service use significantly lower than partnerships nearby • People with dementia in Midlothian less likely to die in hospital • 12 Critical Success factors identified • Report published 2020 Dementia Care Co-ordination in Inverclyde

Brenda Friel Associate Improvement Advisor Inverclyde Health and Social Care Partnership

Enabling health and social care improvement June 2019 – March 2021

Supporting improvements and redesign of community based services to improve the experience, safety and co-ordination of care, services and support for people with dementia from diagnosis to end of life care. The emphasis is on supporting people to stay well at home or in a homely setting for as long as possible.

Taking on a whole systems and pathway approach from diagnosis to end of life, by March 2021, we shall:

• Improve care co-ordination for people with dementia and their carers • Develop/evaluate a model of effective care coordination for people with dementia and their carers • Share learning across GGC, Scotland and wider

Test site: Inverclyde Health and Social Care Partnership Thank you for joining our stakeholder event We were delighted to host 92 attendees at our event including people living with dementia, carers and representatives from local and national organisations. Our attendees had the opportunity to learn more about this work, and joined us in mapping the different stages of the dementia pathway Flash report and to begin to identify improvement themes to inform this work.

Improvement “Our shared vision is of a Scotland where people with dementia Next steps and those who care for them have access to timely, skilled and well co-ordinated support from diagnosis to end of life which helps The outputs from this event with help Hub achieve the outcomes that matter to them”. inform the design of the programme Scottish Government, Dementia Strategy 2017-2020. going forward. To find out more about this work as it Inverclyde care co- About this work Feedback progresses, you can join the Focus on Dementia network and receive our ordination for people with This work is to support the Thank you to those who completed newsletter. You can also follow our dementia programme implementation of Scotland’s our evaluation sharing what they twitter hashtag National Dementia Strategy by liked and what could be improved #Focusoncoordination. stakeholder event improving care co-ordination for about our event. Many of you people with dementia and their commented that you enjoyed the If you are interested in learning more carers from diagnosis to end of life. opportunities for networking and about care co-ordination, you can join 27 September 2019 We will be working with Inverclyde discussion. our webinar on “Care co-ordination - HSCP for 2 years and will be sharing See our infographic below for a what do we know from evidence and the learning across Scotland. summary of your responses. practice?” For more information and to register, visit here. . The day in numbers… nd their carers what 92 attendees 90% do176 we tweets know from Joined us at Agreed that they Tweeted by 36 the event understand the evidencecontributors and new programme practice?during the day [email protected] 90% 83% 58,925 tweet reach Rated the event as Agreed the event Potential number of @ihubscot good or very good helped to begin users who may have #Focusoncoordination prioritising areas seen our hashtag.

General Themes • Support for carers • Quicker access to PDS/diagnosis • Access to rehab/reablement/the contribution of AHPs • LD, young onset, care homes • GPs/Primary Care • Awareness/training • Dementia Friendly Community/culture • “Hub” approach • Single point contact • Care management approach/assessment of physical symptoms/frailty • Being much more anticipatory • Housing/Sheltered housing • Technology/systems

Dementia register/understanding population • Focus on dementia data sub-group • Overall measurement plan

Post Diagnostic Support (PDS) • PDS Data – Local Delivery Plan Standard • Healthcare Improvement Scotland Quality Improvement Framework • PDS Service process map – generated improvement ideas

Number PDS Waiting > 12 weeks

160 4. Weekly waiting 135 140 list review started 128

120 111 103 103 100

80 70 68 55 60 49 1. Start project 35 40 2. Additional 33 links worker 3. Outstanding 20 recruited cases reviewed

0

No. people waiting > 12 weeks Median (2018 - 2019) Learning disabilities (LD) • Initial meeting • Service process map and improvement ideas • Care Pathway and Framework for Supporting Individuals with Learning Disabilities and Dementia • Linking with NHS GGC Learning Disability & Dementia Network Single Point of Access through Access First • Planned April 2020 GP practices – Dementia Friendly GP practices/eFrailty • Dementia Friendly GP Practice Toolkit Learning Session 2

• 6th March Next priority areas • Progress on • Technology improvement ideas • Housing from Learning • Allied Health Session 1 Professionals: Connecting • Data for People, Connecting Improvement Support Next steps • Overall Programme Action Plan & measurement plan • PDSA – capture & share learning • Workforce Development • Dementia Friendly Inverclyde • Review current 8 pillar care coordination • Test Alzheimer Scotland Advanced Dementia Practice Model Questions & discussion

Whose role is it to How is care co- co-ordinate care & ordinated in your support? Link area? worker? MDT? Project Manager? How well is your PDS service connected to primary care? Thank you

ihub.scot/focus-on-dementia http://www.knowledge.scot.nhs.uk/supportingpeopledementia/resources.aspx

[email protected]

@Focusondementia

Enabling health and social care improvement Post-diagnostic Support Groupwork

Maureen Cossar (NHS ) Robert Cruden ( NHS ) Elaine Hunter / Ashley Gray (Alzheimer Scotland)

#Focusonnetworking

Enabling health and social care improvement Welcome & aims of session

• Sharing some of what’s happening nationally and locally • Exchange hints and tips • Be inspired to set up your own groupwork programmes • Network! Make connections for ongoing support and advice. PDS Groupwork Guide Basic hints and tips (extracts from the FoD guide):

• For PDS, groupwork should be complementary to 1:1 support • It’s not an easy option to help address a waiting list • It can support caseload management when in tandem with 1:1 • It can be extremely beneficial to attendees particularly around peer support. “Just being there seemed “…..what can easily to be an end in itself. I feel solitary becomes found myself in a safe a kind of solidarity” place” From the evidence

Subjective benefits are consistently reported as: • Feeling safe to express concerns • Enjoyment of social interaction • A sense of belonging.

Notes of caution: • Groupwork without follow up can leave people with an increased sense of helplessness and decreased quality of life • Educational support without emotional support can have negative effects. Some specific things to consider

• Meeting people beforehand to check suitability • Tailoring the programme to needs & having some flexibility • Making sure the programme is a mix of emotional and educational support • Always having more than one person facilitating at any time • Where appropriate, making it creative and fun! • Facilitators should be relatively experienced in groupwork*. *Some general facilitation tips

• Set ground rules/boundaries together and remind of these at beginning sessions • Have clear objectives, explain the purpose • Have a time keeper • Check how people are feeling throughout • Address any dysfunctional behaviour of group members early • Have a team debrief afterwards, self-evaluate each session. Let’s hear from experience!

3 different groupwork models:

• NHS Tayside – Cognitive Stimulation Therapy group • Alzheimer Scotland – Journey Through Dementia • Lanarkshire – Variety …. The spice of life Cognitive Stimulation Therapy C.S.T.

Robert Cruden NHS Tayside #Focusonnetworking

Enabling health and social care improvement Cognitive Stimulation Therapy C.S.T.

An evaluation of C.S.T within the provision of Post Diagnostic Support Some key principles of C.S.T.

• To mentally stimulate • Encourage new ideas, thoughts and associations • Person-centred • Involvement and inclusion • Opinions rather than facts • Building/strengthening relationships • Fun C.S.T. Participant criteria

• Mild to moderate dementia • Can have a “meaningful” conversation • Can hear well enough to participate in a small group discussion • Vision good enough to see most pictures • Is likely to remain in the group for the whole programme Features of the P.D.S. C.S.T. programme

• 10 sessions, 1 per week • Approximately 1 hour per session • 7 participants invited supported by 2-3 facilitators (recommended group size 5-8) • Different subject for each session • Participants at similar stage of dementia (early) • Good gender mix (3 females, 3 males, 1 non attendee Sessions

• Week 1 – Introductions, aims and naming the group “The Hopefuls” • Week 2 - Group discussion and table games • Week 3 – Thinking games • Week 4 – Occupations • Week 5 – Physical games • Week 6 – Word games • Week 7 – Associated words and famous partnerships • Week 8 – Holidays and Transport (childhood withdrawn) • Week 9 - Group’s choice of activity • Week 10 – Food tasting and textures Venue equipment and costs

• Local community centre with great facilities which included meeting rooms, gym, cinema and cafe. • Equipment included picture cards, objects for identification, quiz books, indoor curling equipment and food and drink for week 10. • Venue hire was free, equipment borrowed from Occupational Therapy and food and drink purchased for £27.54 Evaluation

• Mixed groups of males and females worked well • Same level of cognition allowed participants to express their feelings and thoughts openly • I session (childhood) substituted (holidays) by request of participant – following weeks subject discussed at end of session to allow for any changes. • Group dynamics were very positive with all participants expressing empathy for others • Venue with gymnasium ideal for physical activities • Geographical position of venue required some participants to arrange transport from family and friends • Cafe at venue provided excellent venue for participants to socialise after each session and helped create group bonding and support. Feedback from participants

• I feel that i can express myself again. I feel that my opinions are still valued and are relevant. • I really enjoyed it. I wish it would continue. • I enjoyed the sessions and i would participate again • I really enjoyed myself and I would like to attend again if it is running again. • I really enjoyed myself Key Points

• Dementia –same stage • Good gender mix • Sessions- discuss with participants • Venue -facilities and transport links • Socialising after sessions • Fun Connecting People, Connecting Support

Elaine Hunter / Ashley Gray Alzheimer Scotland #Focusonnetworking

Enabling health and social care improvement Connecting People, Connecting Support Transforming the allied health professionals contribution to supporting people living with dementia in Scotland.

Elaine Hunter Ashleigh Gray [email protected] @elaineahpmh [email protected] @ashleigh_gray1 Connecting People, Connecting Support is all about:

• Better access to the range of AHP’s regardless of age, or place of residence, early in their diagnosis & throughout the illness • Tailored responses to best meet needs, aspirations & wishes. • Integrating the AHP approach in practice, to provide a service www.alzscot.org/ahp truly tailored to individual needs. Connecting People, Connecting Support in action

www.alzscot.org/ahp Connecting People, Connecting Support Making it happen

Small change BIG difference What is Journey through Dementia?

An occupation-based intervention that aims to support people at an early stage of their dementia journey to engage in meaningful activities and maintain community connectedness.

Dr Claire Craig What is Journeying through Dementia Meet the team

Results – Participants Feedback

“I feel we’re helping one another being on the same wavelength”.

“When I go home “I feel more from here I feel confident” better and do more.” Key Factors of Success (Therapist Feedback)

Facilitation Skills

Group Flexibility of Membership the Resource Carer Feedback

“He really enjoyed the Journeying “He is brighter and through more motivated to Dementia group, do things around always came the home.” home happier and lighter.” AHPs supporting the use of resources to be used effectively in provision of services #dementia

[email protected] @ashleigh_gray1 “Very great change, starts from very small conversations, held among people who care” Margaret J Wheatley

Elaine : [email protected] @elaineahpmh Ashleigh: [email protected] @ashleigh_gray1 PDS Group Work

In NHS Lanarkshire Menu of Availability

• Alzheimer Scotland Group-work Sessions • Tailored Activity Programme (TAP) • Cognitive Stimulation Therapy • Home Based Memory Rehabilitation Menu of Availability

• PDS group directly following diagnosis • Memory Management group • Other Group • Responding to Distress in Dementia • Life History work Comparing the Groups

PDS group following Diagnosis MMG & Other Group • Joint group for people with • Two separate groups dementia and carers • Discussed once PDS is being • Prescribed attendance at time of diagnosis provided • Focuses on practical elements • Provides bag of memory aids such as benefits, anticipatory and focus on implementing care plans, adapting the home them into everyday life etc. Responding to Distress in Dementia

• 8 Weekly Sessions • Communication • What do we mean by stress • Super Carers & distress • Problem Solving • The Decision Tree • Non-negotiables • What causes stress & • Relaxation techniques distress • Bio/Psycho/Social factors • Carers Guilt Questionnaire Life Story Groups

• Intergenerational work • Person with dementia • Educating our future becomes the educator workforce • Feels valued and listened to • Improves their skills & • Change in Focus - what they understanding of dementia remember not what they’ve • Learning from the person forgotten with dementia • Engaging, enjoyable and improves confidence “Well I feel as if I’m still “makes me the person I feel good. was, I can Enjoyed the talk and pupils I interact with worked people”. with”. “Someone willing to be so open and personal to share their life experiences and trust such young “I have people”. loved being a part of this and sad it is over”.

“This experience was amazing” Questions & discussion

Who’s Carers and eligible? Groupwork people with versus support dementia group? together? The person who hogs the conversation? Numbers? Ending the group, Duration? what then?

Inconsistent Good attendance? icebreakers? Thank you

ihub.scot/focus-on-dementia http://www.knowledge.scot.nhs.uk/supportingpeopledementia/resources.aspx

[email protected]

@Focusondementia

Enabling health and social care improvement Post-diagnostic Support in Care Homes Who delivers?

Lynn Flannigan / Julie Miller Focus on Dementia, Healthcare Improvement Scotland Tom Bohlke Care Inspectorate #Focusonnetworking

Enabling health and social care improvement Aims of session

Post-diagnostic Support (PDS) in Care Homes: • To briefly share what’s been happening to date • Discussion on who delivers what • Begin the conversation to help Scottish Government and PDS Leads move to action! What do we mean by PDS?

The Local Delivery Plan standard is as follows: ‘People newly diagnosed with dementia will be offered a minimum of one year’s PDS, co-ordinated by a named Link Worker’. Dementia in Care Homes Group

Commitment 8: “We will continue the National Group on Dementia in Care Homes to help ensure that the on-going modernisation of the care home sector takes account of the needs of people with dementia, and will consider the findings of the Care Inspectorate’s themed inspections”

Terms include…. To consider and offer advice to The Scottish Government on responding to and supporting stakeholder responses to the Care Inspectorate dementia-themed report, My Life, My Care Home (December 2017) My life, my care home

Tom Bohlke Inspector Care Inspectorate

Enabling health and social care improvement

• To give us an understanding of what it is like for someone living with dementia in a care home in Scotland. • To identify areas of strength and areas for improvement. • To publish a national report which can be used by all stakeholders to support the care home sector to improve outcomes for people living with dementia. What, where and when

• 150 care homes • From across all regions and local authorities, representing a range of grades, provider types, sizes • Analysed the data from 145 services Standards and themes Dementia standard Quality Themes

I have the right to a diagnosis Care and support

I have the right to be regarded as a unique Care and support individual and to be treated with dignity and respect I have the right to access a range of Care and support treatment, care and supports.

I have the right to be as independent as Environment possible and be included in my community.

I have the right to have carers who are well Staffing, leadership and management supported and educated about dementia.

I have the right to end of life care that Care and support respects my wishes. Overall Grading

I have the right to I have the right to I have the right to I have the right to I have the right to be regarded as a access a range of be as independent carers who are well end of life care that unique individual treatment, care and as possible and to supported and respects my wishes and to be treated supports be included in my educated about with dignity and community dementia respect

Adequate Good Adequate Good Adequate Good Adequate Good Adequate Good or lower or or lower or or lower or or lower or or lower or higher higher higher higher higher

26.2% 73.8% 28.3% 71.7% 40% 60% 38.6% 61.4% 42.1% 57.9% I have the right to a diagnosis

What we expect to see • We expect that people living in a care home receive a timely and accurate diagnosis and are provided with the information they need about their condition, treatments and support. This means that the person receiving the diagnosis and their carers are given the right information at the right time to live well and be involved in decisions that are important to them now and in the future. • Where a person lives should not make any difference to access to a diagnosis and support. Where a person receives a diagnosis of dementia while they are using a care service, we expect care services to play a role in supporting them and their families to understand how that diagnosis will inform their care. In order to do this, staff need to be skilled and knowledgeable about dementia care. • The provider of a care service should prepare a written personal plan after consultation with the person and where appropriate their representative. This plan is a live document and should lead how care and support is delivered to the person. I have the right to a diagnosis

• In 27 care homes (19% of all care homes), we identified people who had been given their diagnosis of dementia in the past year. • For most people, the diagnosis was made by the consultant psychiatrist (44% of these 27 care homes), followed by the GP (33%) and clinical psychologists (11%). • Just under a quarter of these 27 care homes (22%) were not clear who had made the diagnosis for the person. • In the majority of these 27 care homes, staff were unsure of how the diagnosis was communicated to the person and their family. I have the right to a diagnosis

• Our evidence suggests that there was inconsistent and variable post- diagnostic support for people and their families, when someone in a care homes is diagnosed with dementia. Living with cognitive impairment

• We found that 38% of care homes (55 care homes) had residents who have not been formally diagnosed with dementia but are living with cognitive impairment and whose presentation has changed over recent months.

• A total of 80% of these 55 care homes (44 care homes) had the care and treatment needs of all residents reviewed by a professional out with the service following a change in presentation. • Most commonly this review was carried out by:  GP (72% – 34 care homes)  Community Psychiatric Nurse(30% – 14 care homes)  Consultant Psychiatrist (30% – 14 care homes). How do we provide PDS in Care homes? Summary

We found that from the standards we graded just over half of care homes were performing at a Good or better level, however there remain improvements to be made in ensuring that quality of life for people is not limited due to lack of expectations of what it means to be an older person living with dementia in a care home. The full report is available www.careinspectorate.com

Heather Edwards [email protected] http://hub.careinspectorate.com/improveme nt/spotlight-on-dementia/

@HeatherAHP Where are we at in 2020?

Some efforts! Variable No consistency Lack of clarity……. GG&C - 2014 Options paper (4 Options) PDS provision to care homes – what’s currently happening? Focus on it at national PDS Leads meeting 1yr ago (live topic) – Heather Edwards (CI) presented ‘My life, my care home’ report.

Discussion - differing opinions as to whose role…. • Lack of resources (caseload size and waiting lists for PDS). “We’re trying to develop further but capacity is a major issue”. • Need for clarity of roles, work in partnership • Access to these specialist services should be available • Lack of diagnosis/knowledge/expectation/not asking for PDS. PDS provision to care homes – some examples

• – support/education to staff with the expectation that care home staff provide PDS and a care manager has a co-ordination role (6 month/12 month review) • Midlothian – care home team aligned to dementia team. Mixed support – Pillars, education, stress and distress • Shetland – specialist nurse support to those more advanced e.g. prevention and management of stress and distress • East Edinburgh (PDS in PC site) – Recent local consultation with care homes and report with 8 recommendations produced. Recommendation 1 is to run a PDS groupwork course for carers in one of the homes in the new year • NHS Borders have a new Care Home Assessment Team for diagnosis – will link in with new PDS team. PDS Quality Improvement Framework & companion document ihub.scot/dementia- post-diagnostic-support

Criteria in both:

‘There is equitable access to PDS irrespective of (place of) residence’

‘You can access PDS irrespective of …and Just a thought…..PDS framework/guidance for care home support? PDS Quality Improvement Framework – 5 sections, 40 criteria • Could some criteria be met (already being met) by care home staff? • Do other criteria need an external PDS practitioner? • What criteria aren’t relevant for care homes.

• Could something like this support actions? Something simpler….like the Housing and Dementia Framework? • Or make it clearer in the main PDS framework what the PDS practitioner role in care homes should be? Practical Exercise using QIF (20 mins) At your tables quickly sort through the criteria and stick on flip chart: . What should definitely be the PDS worker remit? . What’s reasonable to expect care home staff to achieve? • Bin what isn’t necessary for care home setting • Any burning issues or ideas jot on spare cards • Let’s have a look at what’s emerging! Key points

What messages to take back to C8 group and PDS Leads meeting? Thank you

ihub.scot/focus-on-dementia http://www.knowledge.scot.nhs.uk/supportingpeopledementia/resources.aspx

[email protected]

@Focusondementia

Enabling health and social care improvement