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LCYCP Annual Review 25 October 2013

LCYCP Review Summary Report October 2013, Prepared LCYCP Staff

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LCYCP Annual Review 25 October 2013 Introduction The partnerships 5th Annual Review meeting was held on the 25 October 2013 at the Castle Gate Academy, Lincoln. A delayed meeting usually held in May, the review presents the opportunity to bring together carer’s, providers and commissioners. The theme of this year’s review was around challenging perception and focusing on reality. Amongst key performance updates, workshops were tailored to explore the joys and challenges of carers, with feedback to feed into and inform the review of the Carers Strategy refresh 2014 - 2017. Aims To inform key stakeholders of LCYCP achievements in 2013 To improve shared understanding of the needs/viewpoints of Carers, Providers & Commissioners To gather evidence that will influence and co-design the refreshment of the Carers Strategy To re-engage and involve all key stakeholders Objectives – the above will be achieved by: Collating information of achievements, and involving the partners in the presentation of this documentation Enabling shared listening and talking in a series of workshops Using round table discussions led by facilitators, focussing on two key areas, and collating the information from two key areas: joys and challenges of caring; and issues that are felt important that need to be reflected in the refreshed strategy Welcoming and including, listening to opinions and valuing contributions Attendance: There were 74 attendees (plus 4 LCYCP staff team) totalling 78, of these:40 (51.3%) were carers including young carers (35 carers & 5 providers who were both provider & a carer)

13 (16.7%) were providers 8 (10.3%) were commissioners 17 (21.8%) Others including the LCYCP Staff 54 (69.2%) evaluation forms were completed and returned from:30 (55.5%) Carers 11 (20.4%) Providers 6 (11.1%) Commissioners 6 (11.1%) Others 1 (1.5%) Cared for In summary 80% of attendees thought the content and delivery of the review programme was excellent. The majority of comments reflect these:

See Appendix A for more details. LCYCP Review Summary Report October 2013, Prepared LCYCP Staff

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LCYCP Annual Review 25 October 2013 Workshops - around table discussions and interactive sessions aimed to capture the mix of views; hence each table had a mix of Carers, Providers & Commissioners. Each table was led by a facilitator. Workshop 1 - The Joys & Challenges of caring from three viewpoints CARERS The Joys Being with a loved one Able to keep cared for at home Breathing space provided by paid carers giving respite Being at home allows better interaction with other family members Satisfaction (sense of achievement when things go to plan) Networking/supported by other carers Personal budget Specialist support to meet individual needs Improvement in family relationships Building memories & spending time with them

The Challenges Financial Demanding 24/7 Need patience & understanding as mood and needs of cared for fluctuate Need to have high tolerance levels No time (for self)

Life revolves around the cared for needs Stressful Everything falls to me Conflict with the cared for Need to change the way you do things – everything needs to be planned. No spontaneity Pride in being able to support loved one Work VS Caring balance Small, but positive developments, brings a sense Lack of community understanding and support of pride as you watch them, (your children) confront challenges Watching the inner strength shown by the cared Carrying out simple tasks that are so time and energy for consuming Sharing experiences with other carers Exhaustion from the constancy of caring Two-way appreciation lifts your mood Provider services eg; transport/equipment delivery appear to be at the convenience of the provider Additional skills learnt Unpredictability of caring needs Allows compassion to others Trying to bring happiness into the life of the cared for, but a sadness at not being able to make the cared for ‘better’ Support allows you to relax and know that the Struggling to find the joys cared for is safe Being involved in activities Own health problems are ignored Having no formal support & follow up support is patchy Helps you learn to think of others first, and not Role of carer not valued or recognised by society always yourself One would not choose to be a carer, but neither Respite always comes too late would you choose not to do it ‘Normal’ family life is not possible Assumption by others that they know what help you need Waking up each morning knowing the cared for is The carer loses their own identity still there; helps you learn to live in the present Lack of knowledge about services, especially from GP’s Puts a positive perspective on the world Support groups are not evenly spread throughout the county Seeing achievements, and knowing you have Very emotional & sometimes abused by emotional contributed blackmail LCYCP Review Summary Report October 2013, Prepared LCYCP Staff

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LCYCP Annual Review 25 October 2013 Learn to fight battles

Hard to trust others with care of loved ones

PROVIDERS Joys Small things can make a big difference Privilege to be involved in people’s lives Long term relationships can be developed

Challenges Lack of specialist support for the whole family Young carers have no choice but to mature quickly Cared for parents unable to give their child a ‘normal’ childhood People can self - refer for support Victim of own success Day therapy provided by hospice Lack of resources and security of funding Making a connection with an autistic person Encouraging the Carer to think of themselves Pleasure in seeing a service working well and Encouraging others to respect Carers gratitude of carers Watching families coping well and being well Poor quality services supported Long waiting lists Empowering individuals Encouraging Carers to complain when services are of poor quality Helping to support an improvement in Gathering up to date information to pass on is difficult circumstances Humbled by the trust placed in Providers by Phone contact VS face to face contact carers Positive feedback Limited time and resources Emotionally involved A one-stop shop would be helpful in gathering information Making a difference to someone is so worthwhile Too much paperwork, takes time away from supporting the person Good partnership working Not everyone meets the criteria for services, therefore have to signpost, which can be frustrating Gives quality to the life of the cared for, which in Challenge of supporting those with long term dementia, turn supports the carer although good support at diagnosis & late onset diagnosis Help/support available for as many years as Multi agency working & coordination between Providers needed Job satisfaction Meeting needs of minority groups Joining the dots to ensure no gaps or duplication Enabling early access to support Not always able to meet needs Encouraging carer learning including, ‘Who Cares for You’ Misunderstanding of the words ‘hospice/support’ COMISSIONERS Joys Challenges Ensuring the right services are available to Budgets are not growing, therefore challenging to support carers redesign levels of support Humbling to hear carers stories and experiences Turning challenges into opportunities Being in a privileged position to make a difference To do what we do better Seeing positive partnerships that really work to So many people are Carers, over 79,000 produce something positive Helping bring partners together and being able to Need to learn from other examples in the UK tell people that support is available Lincolnshire has a ring-fenced budget for Carers LCYCP Review Summary Report October 2013, Prepared LCYCP Staff

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LCYCP Annual Review 25 October 2013 Workshop 2 – Using information from the existing strategy and from workshop 1, this workshop asked participants to suggest 6 key ideas that should form the basis of the refreshed strategy. CARERS WHAT 1. Virtual Carer Hubs 2. Transition from Children’s to Adult Services 3. Emotional Support

4. Short Breaks (Respite)

5. Carers Learning

6. Access to Information & Services

7. Reducing Social Isolation

8. Recognition of the necessity of holistic support 9. Support for older Carers

HOW/WHY Mutual signposting between Provider information/websites Reduced duplication Knowledge of what is available: eg benefits/services Will remove difficulties around differences of delivery of provision and will help continuity to make it easier for the Carer Caring includes feelings of guilt Limited/lack of social isolation & activities external to the home Employment, Education, Learning, Leisure (EELLs) Confidence building Networking Understanding emotional needs More support for families/Carers, less focussed on cared for Family coaching & counselling Knowledge of what is available & associated costs Breaks for carer/cared for at the same time/place Earlier access would reduce crisis More flexibility & assurance of high standards of care Involvement of Adults supporting Adults EELLS- training to support caring role: eg manual handling Better support for those Carers who support a cared for who has no label of diagnosis; support/knowledge follows the label Help to understand impact on the future for the Carer/friends/family Help to understand conditions & impact of them Personal development – signpost to external courses 50% of known Carers in Lincolnshire have no access to/or knowledge of IT Greater transparency from Commissioners Transport – a practical problem that often hinders accessibility. Is subsidised transport a reality? Initiation of support to come from schools/employers/health professionals rather than from the Carers Local Authority/Health Service boundaries limit access to services across districts; ie: Could Stamford residents access services in Peterborough rather than Sleaford? Befriending/Mentoring Enabling circles of care Enabling communities to give better support Improved quality of life Supporting families to be independent in an environment that suits all the family Emotional support Physical support Domestic support Will need to be focussed on helping them think of the future & helping

LCYCP Review Summary Report October 2013, Prepared LCYCP Staff

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LCYCP Annual Review 25 October 2013 10. One Stop Shop/Helpline 11. Prevention & Early Intervention

12. Sandwich Carers 13. Equipment 14. Awareness Campaign

15. Assessment’s

Young Carers WHAT 1. Learning

2. Healthcare 3. Identity 4. Engaging with Wider Community

them to recognise their requirements 24/7 – would support better mental health for Carers Need an alternative to CAB for specialist advice eg benefits Early access to intervention and support will help prevent crisis Expectation from Carers that services should be better coordinated: information sharing/funding/assessments/promoting independence Provision that recognises this growing trend Better/quicker sourcing of equipment that may reduce the need for ‘hands on’ support Greater recognition of caring roles Raise profile of caring Education for schools/communities/other professionals Minimum standard that should be expected Reduction in waiting times

HOW/WHY Carers Learning Credits Discount Card Improved support from schools, with additional time for homework, ‘time out’, improved emotional support Support initiated by healthcare professionals Support for the whole family

LCYCP Review Summary Report October 2013, Prepared LCYCP Staff

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LCYCP Annual Review 25 October 2013 Key Messages & Findings Outputs Outcomes Informing key stakeholders of LCYCP Highest number of attendees to a achievements review event ever recorded. Evaluation forms indicate that attendees found the event helpful and informative. Positive comments from commissioners. Improve shared understanding of Joint dialogue which explored the needs/viewpoint of each stakeholder joys and challenges in order that group each understood the others perspective boundaries and challenges. To help influence and co-design the 15 potential areas for Carers Strategy consideration To re-engage and involve all Stakeholders felt included, stakeholders listened to, informed and were interested. A number of Carers attended who had never attended an event like this; they have a better awareness of the services/support available. Additional Outcomes 1. New wellbeing project announced Three additional Carers expressed interest in being involved in this project so greater involvement by carers in co design & production of services 2. Support for Carers Three Carers given specific support from partners who were present on the day so those Carers better supported to fulfil their caring role 3. Carer Champions A volunteer for the soon to be launched CC volunteer scheme. LCYCP Board participation enabled better understanding of the role of LCYCP and the challenges and opportunities 4. Television Crew Television crew filmed the day. To be broadcast on Channel 5, and will reflect how a day like this can offer support to Carers/providers & Commissioners

LCYCP Review Summary Report October 2013, Prepared LCYCP Staff

Evidence See Appendix A

Many comments from all participants, particularly about the powerfulness of the Young Carers testimonies See Table Above See Appendix B

See Appendix C

Alzheimers/Care Support Team / Trusted Assessors

See Appendix C

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LCYCP Annual Review 25 October 2013 A REVIEW DAY CASE STUDY: A member of the LCYCP Staff Team was approached by a distressed Carer. Sue explained that she had not attended any LCYCP events before, but she had been caring for her mother for eight months. She had recently had an assessment for this caring role. In addition to this role, Sue also cares for her two autistic children, so she is a ’sandwich carer’. The member of staff spent a considerable amount of time with Sue, reassuring and listening to her. Sue had no idea that support was available, and the LCYCP Staff member introduced her to a member of the Care Support Team, advised her to contact her Trusted Assessor to ask for information on local support groups in her area. She was also introduced to some of the information available on the stands, and was made aware of the working groups, where she would receive both support and be able to contribute to help change and influence. At the end of the day, Sue said, ‘I had no idea this support was available. Now I have loads of information, know where to go for help, and understand that my emotional state is normal’. The impact of this on this Carer is that she has more confidence for the future, is better supported in her caring role, feels more able to be in control of the situation and sees a way forward to be included and involved. Appendices. A- Evaluation Summary – Pages 9 to 12 B- Post Event Feedback – Page 13 & 14 C- Feedback on Health Strategy Key Themes (including general comments) Pages 15 to 17 D- Example Evaluation Form -Page 18

Quote of the day Clive Yates Engagement & Development LCYCP:-

LCYCP Review Summary Report October 2013, Prepared LCYCP Staff

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LCYCP Annual Review 25 October 2013

Appendix A – Evaluation Forms Attendance Analysis There were 74 attendees (plus 4 LCYCP staff team) totalling 78. Of these:40 (51.3%) were carers including young carers (35 carers & 5 providers who were both provider & a carer)

13 (16.7%) were providers 8 (10.3%) were commissioners 17 (21.8%) Others including the LCYCP Staff Event feedback was invited on the day. An evaluation form was provided on the back of tabled agendas (Example at Appendix D) 54 (69.2%) evaluation forms were completed and returned from:30 (55.5%) Carers 11 (20.4%) Providers 6 (11.1%) Commissioners 6 (11.1%) Others 1 (1.5%) Cared For What the 30 carers feedback shows as a percentage of the total responses –

 Excellent  Good  Could do better Agenda Item Welcome and Icebreaker Successes Partners Young Carer Workshop 1 Workshop 2 The Way Forward

   100% 0% 90% 10% 93% 7% 100% 0% 90% 10% 87% 13% 97% 3%

0% 0% 0% 0% 0% 0% 0%

General Survey Venue Organisation/Admin Communication Relevance Information Stands

   80% 20% 97% 3% 100% 0% 93% 7% 70% 23%

0% 0% 0% 0% 7%

Carer’s Comments Format was very good Well done! More info stands for Young Carers info Excellent event Good contacts made Good to know about plans for the future Thank you! (x3) Don’t normally like icebreakers, but this was ok! Facilitator Observations: - 1 Carer had to leave as sitter had an emergency - 2 Carers on table didn’t want to move tables LCYCP Review Summary Report October 2013, Prepared LCYCP Staff

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LCYCP Annual Review 25 October 2013 Very well organised and run Impressed with mix of people Brilliant day! Fantastic – will come again A very good day Very good speakers Lots of info Grotty hall! Good success stories Good feedback Good discussions Tears of joy! Emotional day Much useful info Balloons were distracting Interesting and informative Informative and interesting (First time x2) Excellent event – very informative (x2) What the 11 provider’s feedback shows as a percentage of the total responses –

 Excellent  Good  Could do better Agenda Item Welcome and Icebreaker Successes Partners Young Carer Workshop 1 Workshop 2 The Way Forward

   100% 0% 91% 0% 82% 8% 100% 0% 91% 9% 82% 18% 82% 18%

0% 9% 0% 0% 0% 0% 0%

General Survey Venue Organisation/Admin Communication Relevance Information Stands

   91% 100% 100% 100% 100%

9% 0% 0% 0% 0%

0% 0% 0% 0% 0%

Provider Comments: Excellent – More please Excellent Icebreaker – not embarrassing! Really enjoyable Best event of this type that I’ve been to Impressed by all the hard work Peta and the team have done Really useful and informative event

LCYCP Review Summary Report October 2013, Prepared LCYCP Staff

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LCYCP Annual Review 25 October 2013 What the 6 Commissioners feedback shows as a percentage of the total responses –

 Excellent  Good  Could do better Agenda Item Welcome and Icebreaker Successes Partners Young Carer Workshop 1 Workshop 2 The Way Forward

 100% 67% 83% 100% 83% 83% 83%

 0% 33% 17% 0% 17% 17% 17%

 0% 0% 0% 0% 0% 0% 0%

General Survey Venue Organisation/Admin Communication Relevance Information Stands

100% 100% 100% 100% 50%

0% 0% 0% 0% 50%

0% 0% 0% 0% 0%

86% 86% 86% 86% 100%

14% 14% 14% 14% 0%

0% 0% 0% 0% 0%

Comments Much more interactive than previous review meetings Good chance to meet and network Fabulous Young Carers – well done! Thank you Good to meet everyone Need better stands from Carers Team, Carers Connect and ‘My Care My Choice’ Great event

What the 6 other and 1 cared for feedback shows as a percentage of the total responses –

 Excellent  Good  Could do better Agenda Item

General Survey

Welcome and Icebreaker Successes Partners Young Carer Workshop 1 Workshop 2 The Way Forward

86% 86% 100% 86% 86% 100% 100%

14% 14% 0% 14% 14% 0% 0%

0% 0% 0% 0% 0% 0% 0%

Venue Organisation/Admin Communication Relevance Information Stands

Comments Young Carers were humbling (x2) Workshops felt a little rushed Need to promote personal budgets Need to focus on safeguarding children Need a hearing loop Better not to move tables LCYCP Review Summary Report October 2013, Prepared LCYCP Staff

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LCYCP Annual Review 25 October 2013 Summary of the 54 Responses: 76% (41) of the responses indicated all of the presentations were

 Excellent

 Excellent 96% (52) of the responses indicated the administration was  Excellent 98% (53) of the responses indicated that the communication was  Excellent 85% (46) of the responses indicated the venue was

Future Event to be referred to as: 46.3% (25) preferred ‘Lincolnshire Annual Carer Conference’ 29.6% (16) preferred ‘Lincolnshire Carers Annual Meeting’ 24.1% (13) preferred ‘LCYCP Annual Review Meeting’ Frequency of Similar Event(s): 45.6% preferred an annual event, a very even mix of all stakeholders 34.8% preferred 6 monthly events, even split of carers and providers 19.6% Quarterly = 9 (majority carers)

LCYCP Review Summary Report October 2013, Prepared LCYCP Staff

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LCYCP Annual Review 25 October 2013 Appendix B – General Comments Lovely welcome on arrival! Well done to all at LCYCP. You’ve really evolved in the best way possible over the last 1 ½ years and are doing a brilliant job! Keep going upwards!

Thank you. Very informative - Carol Foster Very informative day. Thank you to your team for a very fulfilling and beneficial event last Friday. The event was organised and unfolded in a way that ensured the carers/those in support services were central to its outcomes. Carers in attendance were very complimentary across the day! This should be a model for events/ forums across services; as it serves to holistically include those in service intervention. - Elita Cozens (Provider & Carer)

Best meeting yet! Really well organised and great response! - Clare Parker (Provider) Fabulous day – really well organised – everyone so involved and positive. Looking forward to 2014 What an eye opener! Young carers - thought we stopped children going up chimneys, we are going backwards. Carers doing it for themselves! A really useful day. Involvement with the sentiments and feelings of some excellent human beings. - Keith Deeley (County Carers)

Been a really worthwhile day – I’ve met some great carers and providers. - Ann Avison (LCYCP Board) The best meeting that I have attended with the Carers. Well organised - Eric Ormond (Carer) Thanks for what was an excellent review day on Friday. I really liked the format of the day and thought it worked really well – in addition it was great to see so many carers and young carers attending. - Linda Turnbull (Commissioner) I really enjoyed today. I was so impressed with the attitude of the young carers that attended and spoke. It is a pity they can’t run the country.

LCYCP Review Summary Report October 2013, Prepared LCYCP Staff

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LCYCP Annual Review 25 October 2013 Would you please pass on my appreciation to everyone involved in organising today. It was very professionally put together and I think everyone got something out of the day. One thing I had forgotten was that one should always have tissue handy when Pauline speaks. - Nigel Shier (Board)

Congratulations on a very successful event, a huge amount of work, thought and effort went into its preparation and I heard positive feedback from so many different people – from carers, providers, senior managers. I thought the day conveyed the new confidence and competence of the new Carers Partnership. The day serves as a platform for the rest of the year – the work coming up, opportunities to involve carers, new carers and young carers strategy, the new models of service to support carers. A day like today builds trust and hope in all of the participants in the Partnership but also seeing the willingness of all stakeholders to deliver for carers. It was particularly heartening to see so many carers present and to hear their views directly - the engagement exercises in the afternoon worked very well and we have gathered much rich information for the new carer’s strategy. It was particularly good to hear the confident and articulate public speaking of young carers. They've set a great challenge emphasising the need to working closely together on the carer’s agenda and making services even better. With my very best wishes – well done. - Emma Krasinska (Commissioner)

LCYCP Review Summary Report October 2013, Prepared LCYCP Staff

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LCYCP Annual Review 25 October 2013 Appendix C. – Invited comments to inform Health & Wellbeing Strategy Themes – (Post It notes left on sheets) Who or what makes caring easier? Friends The support The dog or cat Spurgeons Other carers, friends and Spurgeons Friends, support, willpower. People who understand Family Newsletter & Leaflet The activities Days out Having someone to talk to – That we are not alone The help of friends Music for relaxing to My pets Friends Caring would be easier if you could access respite care, have family support and schools have more information on caring roles and children with special needs. I have found my SENCO useless and the primary school too. Who or what makes caring harder?

School Homework x10 Emotions. Anger. Sadness People who don’t understand your situation Bullying Exams Not knowing who to talk to Homework, because it takes time / attention off the person you care for People in public not asking the carer before trying to help Screaming Nieces/ Nephews/ Siblings When people don’t care about us as carers. Unappreciated The isolation

LCYCP Review Summary Report October 2013, Prepared LCYCP Staff

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LCYCP Annual Review 25 October 2013 In my dreams, caring would look like…?

A pleasant life A dream Something bad and good at the same time Caring General comments from the Feedback Box posted throughout the day:-

When will the Dementia Resource booklet worked on by Dementia Working Group be available? - Kate Marshall Young carers said good support – enables them to do other things. Good to see the people they care for happy. Days out with other young carers. I was both humbled and inspired by the testimony of the young people. - Keith Deeley – County Carers Respite for Steven Hill - Geraldine – carer How can we have support carers whose cared for “won’t go” to respite? Assessments need to ensure info given about Support Groups Google – Benefits and work website gives advice on filling ESA and PIP forms in (Not to do with DWP) Gainsborough GPs don’t have info. Services don’t see/ understand what goes on/ have to cope with behind the scenes (at home) Personal budget. Personal assistance. Forces (helps) people get involved (School Governors) We get good support from Adult Care Commissioners. Young carers said: most stressful at bedtime – be on time, get ready for a young carer. Going to different clubs – coordinating. Young carers – Most stressful time – coming home from school to bedtime – tempers flare. Constant stress but got to put a smile on and work through it. One wish: More support within the family and within school time, more support for parents. Name badges for board members.

LCYCP Review Summary Report October 2013, Prepared LCYCP Staff

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LCYCP Annual Review 25 October 2013 Person who did first but didn’t say who she was. Carers got Talent Event - Trish Hargreaves Without you where would we be without you supporting us? Promote ‘best interest’. Cared for may not want emergency respite. Educate them in their best interest. Joy – Support for each other to see a happy person at the end of the day. Challenge – Trying to make happy. Officialdom doesn’t understand the problems. Finding time to do things for yourself.

LCYCP Review Summary Report October 2013, Prepared LCYCP Staff

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LCYCP Annual Review 25 October 2013 Appendix D – Example of event evaluation form

LCYCP Review Summary Report October 2013, Prepared LCYCP Staff

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LCYCP Annual Review 25 October 2013

Twitter @lincscarers

LCYCP Review Summary Report October 2013, Prepared LCYCP Staff

facebook.com/LincsCarers

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LCYCP's Annual Review Evaluation 2013  
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