Report from Yorkshire and Humber regional event, 6th June 2014

Support for Carers of People with Dementia

Val Rhodes InRhodes Consultancy

Improving access to information for carers: Getting the right information at the right time in the right way

For more information please contact:

Kirste Mellish, Improvement Programme Manager [email protected], 01274 383925

Contents

Page

1 Background

2

2 Overview of programme

3

3 Summary of key themes, issues and opportunities 3a What‟s working well and the challenges

5

3b 3c

Information needs of carers along a pathway Identifying and measuring improvements

5 8 15

4 Outcomes of event

18

5 Next steps

20

6 Evaluation summary

21

7 Appendices

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Page 1

1

BACKGROUND

The Yorkshire and Humber (Y&H) Improvement Academy, which forms part of the Y&H Academic Health Science Network (AHSN), is delivering a number of projects focusing on the high impact innovations described in the Innovation Health and Wealth report (2011). One of the projects is focusing on the support needs of carers of people with dementia across the Y&H region. In November 2013 – January 2014 a scoping exercise took place to identify what was available to dementia carers across the Y&H region in terms of support, examples of good practice and the gaps and challenges faced by the stakeholders interviewed. The scoping work involved a limited review of relevant policy documents and research literature and discussions with key people in the Y&H health community. These included staff from 3rd sector organisations, community services, mental health and acute trusts and local authorities. The report highlighted eight themes relating to carer support needs: 1. 2. 3. 4. 5. 6. 7. 8.

Communications with dementia carers in hospital settings Post diagnostic support and sign posting Identifying carers Information for carers on available support Evaluating outcomes and impacts of support interventions for carers Developing informal support systems Working carers Identifying the health needs of carers

Based on the findings from the stakeholder discussions and national reports it was decided that the priority area that could be best supported by the Improvement Academy in collaboration with partners would be that of improving access to appropriate information for carers. The proposal was supported by stakeholders interviewed and by members of the Y&H Regional Dementia Leads group. The next steps included: The commissioning of an “Effectiveness Matters” paper (University of York Centre for Reviews and Dissemination) to summarise evidence on effective information, support and services to meet the needs of dementia carers. For the Improvement Academy to facilitate a regional event on improving access to information for carers.

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2

OVERVIEW OF PROGRAMME

The conference was held on 6th June 2014 at the Hilton Hotel in York. There were 71 attendees from across the Y&H region including staff from statutory and non-statutory services, volunteers from carers organisation and carers of those with dementia. A list of attendees is provided in appendix 1. The conference chair Ruth Hannan, Policy and Development Manager (Mental Health) at Carers Trust started the event by welcoming everyone and giving the opening remarks. Val Rhodes who worked with the Improvement Academy on the scoping exercise on the needs of dementia carers gave a brief summary of the work and set out some of the key findings under each of the eight themes and the main points regarding information from the Effectiveness Matters publication. The aims of the day were shared and these were to: 1. Agree principles for improvements – what are the key stages of the caring journey at which information is needed, what information is needed and how can it be made accessible to all? 2. Share examples of good practice from across the region. 3. Look at how best to deliver improvements across the region – what could be developed and how might outcomes be measured? Val asked that people consider what could be produced from the day that would be useful both regionally and locally and how we could use what has already been produced in the „Road Less Rocky‟ report (2013) and apply it to our services. Louise Langham from the Dementia Action Alliance spoke on the Carers‟ Call to Action and outlined the 5 key aims of their shared vision: Family carers of people with dementia: 1. Have recognition of their unique experience 2. Are recognised as essential partners in care 3. Have access to expertise in dementia care 4. Have assessments and support 5. Have confidence that they are able to access good quality care, support and respite services

Louise shared the work that was being done to develop a Top 20 checklist for commissioners and the resources available on the Carers‟ Call to Action website. All members of the audience were encouraged to sign up and share the vision with others. This was followed up by a powerful and moving account from Ray Carver who spoke of her personal experiences as a carer for her husband who suffered with early onset dementia. She shared the challenges she faced balancing caring for her husband with looking after her family and trying to hold down a career. She described her support needs throughout this time and the frustrations she faced in trying to get the right help. Ruth Chamberlain, a member of the „Road Less Rocky‟ report research team, outlined the objectives of the report which were to explore the key stress points along the „caring journey‟ when information and support are required and the types of information and support needed by carers in relation to caring for

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the person with dementia. She described the „timeline‟ method used with carers to identify their support needs and some of the key findings from the report including the ten „trigger points‟ for support and information. The ten trigger points from “Road Less Rocky” were then used as a framework for two group work sessions, in which small mixed facilitated groups discussed the needs of dementia carers during their journey and how and by whom information should be given to carers. Helen Turner & Ian Mc Creath from the Alzheimers Society talked about a Personal Budgets and Dementia project which looked to improve access to good quality information and advice about personal budgets and direct payments. Tom Chrisp from ARC Research and Consultancy Ltd shared clips from a newly launched dementia carers website which captures top tips and advice directly from carers in video formats as well as giving links to other materials and local activities (http://www.dementiacarer.net/). Akhlak Rauf from Meri Yaadain spoke of how the Bradford based project has used a community development approach to work with community leaders and gatekeepers as well as with families and those with dementia to improve understanding around dementia and improve access to services in South Asian communities. This was followed by a third group work session in which the groups discussed what improvements might look like for carers and how these could be measured. The outputs from the group work sessions are summarised in Section 3. The day ended with an overview of next steps from Val Rhodes and closing comments from Ruth Hannan. The programme is available in appendix 2 All of the slides from the event are available via the following link: http://www.yhahsn.org.uk/improvement-academy/current-improvement-projects/support-for-carers-ofpeople-with-dementia/

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3

SUMMARY OF KEY THEMES, ISSUES AND OPPORTUNITIES

3A

W H AT ’ S W O R K I N G W E L L A N D T H E C H A L L E N G E S

In group work session 1, the group members were asked to introduce themselves and share something that works well regarding information for dementia carers in their locality, and also a challenge that they face. The responses have been collated and grouped under the themes below.

What’s working well? Direct support to carers It was clear that one of the things that group members thought worked well was direct support to carers that was face to face with no constraints on time. Services that are consistent, flexible and able to meet individual needs work well. There were examples of open door policies for carers services, respite support, holiday breaks and support from Admiral nurses. Kirklees hold evening support groups for carers who work; St Annes in Dewsbury offers breaks for carers during the early stages of dementia; Selby Carers centre has no time limits on the services they provide; Bradford has a dementia project which focuses on the needs of the South Asian population Informal peer support Group members shared many examples of informal support networks for carers which worked well, these included social groups with a focus on leisure, work and hobbies, walking groups and trips out. The Carers Resource in Skipton shared an example of a formal group which continued to run as a social group with a focus on leisure activities. Kirklees holds IT training days as well as day clubs and memory groups. Carers training courses There were a number of courses and training programmes aimed specifically at carers that were all considered to be working well locally, these included Positive Steps run by Admiral Nurses in Kirklees, the Alzheimer‟s Society CRISP programme as well as their “Caring and Coping” course, and the Living Well with Dementia courses in Knaresborough and Kirklees. Partnership working There were examples of partnerships that were impacting positively on carers; Barnsley Acute Hospital has a volunteer from the Alzheimer‟s Society who can sign post people on and Leeds Teaching Hospital has a dementia carer support worker who has received 100 referrals since October 2013. Some GPs had workers based in their surgeries; Scarborough is developing carer link workers in primary care. Sheffield City Council is working with a local CCG to develop joint planning around dementia and others gave examples of effective partnerships between secondary memory services and third sector services.

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Effective systems When systems worked well they created a smoother pathway for the carer, examples shared included: third sector services such as the East Riding Carer Support Service carrying out carers assessments and developing a GP registration pathway; early interventions designed to keep people at home in North Yorkshire; good internal information sharing in Doncaster Council; a carers run meeting with commissioners in Sheffield.

What are the challenges? A lack of joined up working The lack of joined up working between organisations was one of the key challenges raised by group members. Examples included poor working between hospital and community services, between health and social care and between third sector and statutory services. Disconnected services led to barriers and red tape for carers especially in accessing services such as mental health and drug and alcohol services. Barriers around confidentiality meant that information was not always passed on between services. The barriers between services also meant that some third sector services received a lack of referrals from statutory services in mental health and primary care. There was felt to be very little joint working with public sector services such as police and fire services where there are many shared issues around dementia. Getting the information right It was apparent that getting the right information to carers was a challenge, carers either received too much or not enough information, and when it was received could be pot luck. Information could sometimes be inaccessible either because it was only available on the internet or because it was not available in different languages. Staff giving out information said it was time consuming and difficult to keep up to date with all the different carer related schemes. Primary and secondary care There were a number of challenges identified with primary care services including a general lack of support for carers, a lack of referral by GPs to carer groups and organisations and a lack of understanding from GPs resulting in carers getting little information or too much information. Memory services often take a long time to diagnose dementia and a reliance on memory testing means they are not always sensitive and listening to carers. Others felt that memory services could be too medically focused and that they needed a more holistic approach which took social care into account.

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Reduced resources The impact of reduced resources caused challenges for many people, funding for services were often cut and health and social care services were reduced which impacted on carers respite and the ability to access carers grants. Third sector services identified a reduction in the numbers of volunteers available. Geography and demographics There were challenges identified for those carers who lived in more rural areas, there was often no funding for transport for those who required it. Staff in rural areas said they had large areas to cover with limited staff. For people from BME communities there were challenges of under representation and a lack of information available in South Asian languages. Sustainability There was a frustration that despite lots of good practice there remained the challenge in applying what was learned. There was a feeling that there was „lots of talk‟ but that changes were often not mainstreamed. Services shared the challenge of delivering sustainable and consistent services when successful short term projects had funding terminated rather than becoming mainstreamed. There was often a sense of repetition as new similar short term projects were established with a similar remit. Other challenges These included difficulty in accessing age appropriate activities for those with early onset dementia and the pressure for services to meet targets or deliver contractual agreements which did not always align with individual carer needs. There was a gap identified by carers once a diagnosis of dementia had been given and there was also felt to be little in terms of helping carers to develop resilience.

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3B

I N F O R M AT I O N N E E D S D U R I N G T HE C A R E RS J O U R N E Y

Following discussions of what is working well and the challenges, group work session 1 focused on the needs of carers along the caring journey. Group members were asked to use the „Road Less Rocky‟ 10 stress points and consider whether there were any additional key points or information requirements that they felt would be beneficial, and to collate them under the appropriate stress point. Group work session 2 looked at how the information to carers should be given and by whom. Each table focused on one of the 10 stress points adding the ideal format for the information and who they thought best placed to give it. There was a consensus from all of the attendees that the „Road Less Rocky‟ 10 stress points were an accurate reflection of a carer‟s journey and should be used as the basis for planning carers‟ information requirements. Attendees felt that the stress point relating to incontinence perhaps should refer to toileting needs, as these can result from either incontinence or memory problems, such as not being able to find the toilet. Attendees also identified pre-diagnosis and bereavement / life post caring as stress points. These were identified as areas of need in Road Less Rocky, but not included as key stress points. It should be noted that “pre-diagnosis” is a problematic term, as many carers may go through several or all of the stress points without the person they care for having had a diagnosis. The information gathered from group work sessions 1 and 2 has been collated into the tables below. Under the stress points, the tables describe the information requirements based on the group work discussions. Blue indicates key stress points from Road Less Rocky, orange represents discussion during the event. The “Road Less Rocky” executive summary on which the group work sessions were based is included in Appendix 3.

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When dementia is diagnosed

When the carer takes on an „active‟ caring role

INFORMATION NEEDS

INFORMATION NEEDS

Self-care advice. Advocacy. Peer support. Dementia medication

CONSIDERATIONS

Signposting to services/activities. Roles in the family. Needing to learn new skills – things the person with dementia did. Power of attorney / wills CONSIDERATIONS Be aware of young carers – may not identify themselves as carers. Ask the question ‘Do you look after someone?’ Employers be made aware of the carers needs Consider health needs of the carers. Difficult to define when a carer becomes an active carer

INFORMATION FORMAT Self Help guide Up to date leaflets INFORMATION PROVIDED BY GP Memory Assessment clinics Someone who will continue to be involved

INFORMATION FORMAT Training – induction to dementia

INFORMATION PROVIDED BY First point of contact Provided in the right place – no stigma

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When the capacity of the person with dementia declines

When the carer needs emotional support and/or a break from caring

INFORMATION NEEDS

INFORMATION NEEDS

DVLA information on driving.

CONSIDERATIONS Consider conflicting family needs. INFORMATION FORMAT Face to Face Web based Easy Read – concise, pictures Experiences / stories / plays INFORMATION PROVIDED BY Trusted professional - memory clinic, dementia support worker Carers / peers

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Information on respite and direct payments. DWP visits for vulnerable people. CONSIDERATIONS Human element is vital INFORMATION FORMAT Clear access point for information Face to Face or telephone Chat rooms, books

INFORMATION PROVIDED BY Peer support groups Professional advisor, e.g. Admiral Nurse Support Worker Educational programmes Café approach

When the person with dementia loses their mobility

When the person with dementia has other health problems

INFORMATION NEEDS

INFORMATION NEEDS

Availability of funding. Blue Badge parking scheme. Falls prevention advice. Lifting and handling. Mobility aids. CONSIDERATIONS

Information on residential care if required. Medication advice and management.

CONSIDERATIONS Make sure other professionals know the person has dementia so allowances can be made for appointments etc.

INFORMATION FORMAT Phone Face to face for emotional support Leaflets; In different languages / easy read format INFORMATION PROVIDED BY One point of contact to sign post on Consistent across all organisations

INFORMATION FORMAT Care plan format to follow the person

INFORMATION PROVIDED BY Professional to give medical advice MDT approach – in partnership

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When the carer has to cope with behavior problems

When the carer‟s own circumstances change

INFORMATION NEEDS

INFORMATION NEEDS

Education: predicting behaviour and dealing with risk. Dealing with violent behaviour. Different progression for different dementias. Understand sexualised behaviours. How to manage behaviours effectively CONSIDERATIONS Gender of the worker can be an issue to carers raising concerns especially for sensitive issues. Beware of concerns that individuals might be taken away / sectioned, feelings of disloyalty INFORMATION FORMAT Face to face

INFORMATION PROVIDED BY Carer support workers in GP practices Domiciliary care workers

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Coping with sleeplessness. Information on health, finances and employment.

CONSIDERATIONS Develop plans upstream for predictable events.

INFORMATION FORMAT Social networks Face to Face groups INFORMATION PROVIDED BY A trusted person who can relate to the carer and navigate a complex system Dementia carers advisors Health & social care system Skill people up to find information themselves

When the person with dementia has toileting needs (due to incontinence or memory)

When decisions about residential care / end of life care are made

INFORMATION NEEDS

INFORMATION NEEDS

How to access small grants for washing equipment. Signage for finding the toilet.

CONSIDERATIONS

Having the option of staying together in the care home. Information on the prognosis to aid decision making. Legal advice. CONSIDERATIONS Family, religious and cultural factors Privacy Advance planning

INFORMATION FORMAT Face to face

INFORMATION PROVIDED BY A professional who understands dementia and incontinence. Someone well known to the carer.

INFORMATION FORMAT Written in different languages Web based Library information INFORMATION PROVIDED BY Person closest to person with dementia.

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Pre-diagnosis

Bereavement & life post caring

INFORMATION NEEDS

INFORMATION NEEDS

Information about the trajectory of the disease. Support during the wait for the diagnosis. CONSIDERATIONS

Rebuilding a life.

CONSIDERATIONS

For South Asian families there is no word for ‘dementia’- symptoms and history are important. Pro-active in diagnosing dementia for people with Learning Disabilities. INFORMATION FORMAT

INFORMATION FORMAT

Awareness raising in the community. Employer alerts. INFORMATION PROVIDED BY Carer support workers in GP practices Domiciliary care workers

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INFORMATION PROVIDED BY

3C

IDENTIFYING AND MEAS URING IMPROVEMENTS

Group work session 3 focused on what improvements might look like for carers and how improvements could be measured. Group members were asked to consider the carer pathway as a whole and identify areas for improvements or existing developments and good practice that would make a difference to the quality of information sharing with carers. They were also asked to consider what measurements could be used to identify if improvements have been made. The ideas for improvements have been collated under the following eight headings: 1

Carer support Identify more funding for carer transport Face to face consultations with carers Provide ongoing long term support to carers; personalised, continuity, able to cut through maze Provide access to services outside 9-5 to support working carers Identify one person the carer could contact who would remain involved No call centres - direct contact with a person Better use of Dementia friends, Dementia champions supporting carers Enough people to provide emotional support – prevent carers being signposted backwards and forwards between different organisations

2

Empowering carers Involving carers more in services Create carer led developments, so they are part of a real process Tell carers they are doing a fantastic job Offers of support from professionals with options to carers to do it themselves User forum eg Strategic Clinical Network (SCN)

3

Information Provide access to local information Provide forewarning about later stages Develop culturally appropriate assessments Provide Roadshows/talks Educational programmes for carers Create check lists for staged information Record where the information is obtained: know successful sources Much more emphasis on right information at the right time Base services within rural areas, in reach to rural communities Provide concise information to take away following diagnosis Improve clarity for carers on where they should go for information Give pension advice Literature available in other languages / literacy levels

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4

Joined up care Improve links between information in acute care/primary care/ community care Better coordination between ourselves - share information Link up services, GPs in particular Knowing who is doing what would help services Better care fund - joint commissioning Partnerships/links with others – work together to avoid duplication Agreed pathways Consider individuals on the border of a locality

5

Sharing good practice Share information on good practice Use sites such as CHAIN and the Improvement Academy web pages Use evidence-based information “Green Card” referral scheme; information to carers centre, enables triage, prompt recognition as carer - GP appointment priority Single points of access - Doncaster cancer hub as an example Community pharmacists to identify carers (Carers Leeds) Yorkshire Coast Homes raising awareness amongst staff about carer support available Carers Trust devising a tool to measure impact on carers Safety Neighbourhood Team (police, fire, social care) invite carer support services to present Organisations getting together to share best practice/ideas on a local level

6

Strategic developments Services need to be ongoing and sustained Learning Disabilities and dementia is an area that needs to be addressed in terms of research, information, provision and support Develop a carers register Develop regional tool kit eg SCN Workforce development - linked to existing training programme Mandatory training for nurses and social workers A compact about user involvement (waking up health services)

7

Technology and social media Give carers an app so every time they use a service they can give it a rating Develop a memory app for local services Tom Chrisp website could be useful to get conversations going locally Better use of Twitter/websites/Pinterest Need improved internet access in rural areas

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Ideas for measurement of improvements are summarised below: 1.

Process How many carers access a service Improved identification of carers - accurate measure of number of carers Measures linked to user involvement - what is important to carers?

2.

Carer experience Ask the carer – satisfaction questionnaires, knowledge (eg before and after education) Narratives & testimonials from carers

3.

Carer outcomes Frequency of carer visits to GP Carer quality of life; quality of life tool for adult carers Cost effectiveness How is the carer coping? Outcome Star Reduced/delayed admissions (of person with dementia) to long term care

It was noted that measurements and evaluations should not be time consuming and expensive.

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4

OUTCOMES OF EVENT

Two attendees signed up to Carers‟ Call to Action at the event (many had already signed up).

I ran a workshop the following week at an ADASS regional conference on personalisation. I was very struck by the sense of loss conveyed by Ray, the carer who spoke at your event, and I incorporated that into my presentation. We had some really good examples of how a personal budget had helped to give couples more good times together. It has reinforced my determination to overcome the obstacles to personalised care, and enhanced the positive arguments we have for it. Tim Sanders, NHS Leeds North CCG / Leeds City Council

In the month following the event, a number of attendees had made or planned changes in their practice and/or were developing new collaborations as a result of attending.

We run an all-day memory group for people with dementia, which allows carers to have time to themselves. Since your event, we have discussed extending our support for carers by providing them with an opportunity to meet and support each other in some way. However as a charity we shall have to try to find a source of funding. I would like to re-iterate to the NHS that there are many very able voluntary organisations in communities which could do much valuable work with a small amount of extra funding to help them meet the core costs of running their activities, enabling them to keep people involved in local life thus promoting their wellbeing. Jeanette Lodge, The Denby Dale Centre

Several attendees also noted that obtaining funding and engaging with NHS colleagues to improve support for carers remained a challenge.

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I have arranged a visit to the Carers Centre in Beverley with the possibility of sharing good practice and resources. Paula Wood, St Anne’s Community Services

We have been giving details of the website dementiacarer.net to carers who attend the memory clinic, and our Lead Memory Nurse is liaising with Tom Chrisp regarding adding information on local services to the website. Catherine Binns, The Memory Service Knaresborough

The event has made me more aware of the amount of information I provide; therefore I will try not to “overload” carers with information. I will continue to ensure that carers have the contact details for our Carers‟ Centre in case of any future crisis points as highlighted by Road Less Rocky. Tracy Hurst, Rotherham Council

We are hoping to work more closely with Dementia Forward as a result of discussions on the day, and to incorporate some of the comments, particularly from the carer who spoke, into the work we are already doing. Sharron Smith, York Carers Centre One of the actions I am thinking of here in Leeds is to introduce more face to face time with carers (resources permitting). Rhian Barnabas, Armley Grange

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5

NEXT STEPS

The Improvement Academy is planning the following: Compile the list of what is working well and the challenges in localities that were shared on the day, and gather some of these examples as case studies of good practice. Follow up with attendees who have shared examples of changes they have made or plan to make as a result of the event to find out if these changes have led to improvements. Work with the SCN and Carers Trust to investigate whether the information gathered in group work sessions one and two could be connected to that of „A Road Less Rocky‟ to develop an information check list which could be used across the region. o

A checklist could be used as a diagnostic tool to identify where there are gaps in the information available (content, format and timing), or to signpost professionals and carers to the relevant resources within their own locality.

o

If a checklist is produced, the Improvement Academy may be able to provide support to localities for effective implementation of the checklist in order to improve access to the right information in the right format at the right time.

All documents produced will be distributed to those who attended the event and also via the regional networks of the Improvement Academy, the SCN and the Regional Dementia Leads Group, and will be available on the Improvement Academy website.

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EVALUATION SUMMARY

Feedback forms were completed by 43 (61%) of the attendees at the end of the event.

KEY MESSAGES Overall the format of presentations and group discussions worked well. Good opportunity to network, share ideas and experiences. Carer involvement and mix of delegates was valuable. Practical examples of projects and good practice were useful. Event could have been improved by more opportunities to ask questions of speakers. Discussions highlighted the discrepancy between an ideal service and real world restrictions, and the challenges of achieving change.

F E E DBACK S CORE S

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EXPERIENCE OF THE EVENT

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APPENDICES

APPENDIX 1

C O N F E R E N C E AT T E N DA N C E L I S T

Name

Role

Organisation

Margaret Adams

Volunteer

Healthwatch North Yorkshire

Nicky Addison

Admiral Nurse

Dementia Forward

Karen Appleyard

Social Care Worker

City of York Council

Tony Bacon

Contract Manager (Mental Health)

Kirklees Council

Louise Barber Rhian Barnabas

Office Manager / Events Co-ordinator Improvement Academy Dementia Carers Support Service Manager

Yorkshire & Humber Academic Health Science Network Alzheimer's Society

Catherine Binns

Senior Occupational Therapist

Christine Boxall

Service Co-ordinator Carer‟s Time Off

TEES, ESK AND WEAR VALLEYS NHS FOUNDATION TRUST Harrogate & Ripon Centres for Voluntary Service

Corinne Brown

Carer

Vicky Brown

Patient Safety Fellow

Bradford Institute for Health Research

Ruth Burke

Dementia Matron

Matthew Burns

Admiral Nurse

South West Yorkshire Partnership NHS Foundation Trust South West Yorkshire Partnership NHS Foundation Trust ARC Research

Senior Commissioning Manager

Sheffield CCG

Sharron Tabbeser Sarah Burt Hedra Butler

Selby Carers Centre

Aisha Butt

Donisthorpe Hall

Sian Cartwright

Health Development Manager

Ray Carver

Carer

Ruth Chamberlain

Commissioning and Change Officer, Health and Adult Services, NYCC (p/t) and Senior Researcher, Firefly Research and Evaluation (p/t) Admiral Nurse

North Yorkshire County Council

Strategic Mental Health Project Lead

Scarborough and Ryedale CCG

Heather Chase Tom Chrisp John Clare Michele Clarke Gina Clayton Justin Mazzotta

Carers Leeds

NAViGO Health and Social Care Community Interest Company ARC Research Doncaster CCG

Carer Dementia Forward

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Name

Role

Organisation

Julia Cragie

Dementia Support Worker

Making Space

Carol Irving

Carer

Pat Byrne Clare Drew

City of York Council Elderly Care Nurse Specialist

Emily Abbott Coleen Ellis

Barnsley NHS Foundation Trust Here Now Dementia

Team Manager

Julie Garbutt

East Riding of Yorkshire Council Doncaster Carers

Hazel Griffiths Mark Griffiths Ruth Hannan

Policy and Development Manager (Mental Health)

Carers Trust

Debi Hawkins

Carers Resource

Lisa Hickman

Alzheimer's Society

Elaine Holtby

East Riding of Yorkshire Council

Holly Hudson

Alzheimer's Society

Tracy Hurst

Carer Support Officer

Jane Inglesfield

Team Leader

Rotherham Metropolitan Borough Council Making Space

Steve Jakeman

Commissioning Officer – Dementia

Sheffield City Council

Bernadette James

Carer Support Worker

City of York Council

Lynne James

Mainstay

Heather Kelly

CISS Manager

City Health Care Partnership CIC

Penny Kirk

Improvement Manager (dementia)

Louise Langham

Carers Co-ordinator for the Carers Call2Action

Strategic Clinical Network Yorkshire & Humber Dementia Action Alliance

Jeanette Lodge

Chairman

Denby Dale Centre

Bridget Maguire

Carers Commissioning Officer

Leeds Council

Ian McCreath

Personal Choice Programme Manager

Alzheimer's Society

Kirste Mellish

Programme Manager, Improvement Academy

Jan Oyebode

Professor of Dementia Care

Yorkshire & Humber Academic Health Science Network University of Bradford

Vicky Padgett

Implementation Manager, Improvement Academy

Sahdia Parveen

Research Fellow

Yorkshire & Humber Academic Health Science Network University of Bradford

Sean Price

Stronger Communities Officer

Doncaster Council

Akhlak Rauf

Health & Social Care Projects Officer

Bradford Council

Susan Reape

Community Facilitator

City of York Council

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Name

Role

Organisation

Val Rhodes

Director

InRhodes Consultancy

Alyson Ripley

Elderly Care Nurse Specialist

Barnsley NHS Foundation Trust

Caroline Roberts

Partner Support Manager

Department for Work and Pensions

Michelle Roberts Tim Sanders

St Anne‟s Community Service

Beverley Slater

Integrated Commissioning and Transformation Manager, Dementia Director, Improvement Academy

Sharron Smith

Development Officer

Glyn Smith Fiona Sweeney

Leeds North CCG Yorkshire & Humber Academic Health Science Network York Carers Centre Doncaster Council

Hospital based carers support worker (dementia)

Emma Teasdale

Carers Leeds Carers Resource

Helen Turner

Project Manager - Alzheimer's Society

Nottinghamshire County Council

Nicola Walden

Director (York)

Bluebird Care

Paula Wood

Service Manager

South West Yorkshire Partnership NHS Foundation Trust St Anne‟s Community Service

Diane Wordsworth

Adult Carer Support Worker

Suzanne Wightman

Hambleton & Richmondshire Carers Centre

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APPENDIX 2

C O N F E R E N C E P RO G R A M M E

Time

Topic

Speakers

09:00

Registration

09:30

Welcome and introductions

Ruth Hannan (Chair person), Carers Trust

09:40

Background context and key issues

Val Rhodes, InRhodes Ltd / Improvement Academy

Aims for the day 10:00

Carers‟ Call to Action

Louise Langham, Dementia Action Alliance

Carer Perspective

Ray Carver, Carer

10:20

Introduction to A Road Less Rocky

Ruth Chamberlain, North Yorkshire County Council / Firefly Research and Evaluation

10:35

Group work 1: what are the needs of dementia carers along a pathway

Val Rhodes

11:30

Group feedback: pathways and needs

12.15

Lunch

13:15

Group work 2: how should information be given to carers and by whom

13:45

Group feedback: challenges

14:15

Consultation with dementia support groups regarding information for carers

Ian McCreath, Helen Turner Alzheimer’s Society

Development of a dementia carers website

Tom Chrisp, ARC Research

Dementia carers: South Asian communities

Akhlak Rauf, Meri Yaadain

15:15

Group work 3: what might improvements look like for carers; measuring improvements

Val Rhodes

15:45

Group feedback

16.00

Next steps

Val Rhodes

16:20

Closing comments

Ruth Hannan

16:30

Depart

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Val Rhodes

APPENDIX 3

A R OA D L E S S R O C K Y : E X E C U T I V E S U M M A RY

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