LCYCP's Annual Review Evaluation 2013

LCYCP Annual Review 25 October 2013

LCYCP Review Summary Report October 2013, Prepared LCYCP Staff - Event Photographs Provided by C4 Images Page 1 of 19



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.



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 The Challenges

Being with a loved one Financial

Able to keep cared for at home Demanding 24/7

Breathing space provided by paid carers giving respite

Need patience & understanding as mood and needs of cared for fluctuate

Being at home allows better interaction with other family members

Need to have high tolerance levels

Satisfaction (sense of achievement when things go to plan)

No time (for self)

Networking/supported by other carers Life revolves around the cared for needs

Personal budget Stressful

Specialist support to meet individual needs Everything falls to me

Improvement in family relationships Conflict with the cared for

Building memories & spending time with them 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 of pride as you watch them, (your children) confront challenges

Lack of community understanding and support

Watching the inner strength shown by the cared for

Carrying out simple tasks that are so time and energy 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 cared for is safe

Struggling to find the joys

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 always yourself

Role of carer not valued or recognised by society

One would not choose to be a carer, but neither would you choose not to do it

Respite always comes too late

‘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 still there; helps you learn to live in the present

The carer loses their own identity 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 contributed

Very emotional & sometimes abused by emotional blackmail



Learn to fight battles Hard to trust others with care of loved ones

PROVIDERS

Joys Challenges

Small things can make a big difference Lack of specialist support for the whole family

Privilege to be involved in people’s lives Young carers have no choice but to mature quickly

Long term relationships can be developed 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 gratitude of carers

Encouraging others to respect Carers

Watching families coping well and being well supported

Poor quality services

Long waiting lists

Empowering individuals Encouraging Carers to complain when services are of poor quality

Helping to support an improvement in circumstances

Gathering up to date information to pass on is difficult

Humbled by the trust placed in Providers by carers

Phone contact VS face to face contact

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 turn supports the carer

Challenge of supporting those with long term dementia, although good support at diagnosis & late onset diagnosis

Help/support available for as many years as needed

Multi agency working & coordination between Providers

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 support carers

Budgets are not growing, therefore challenging to 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 produce something positive

So many people are Carers, over 79,000

Helping bring partners together and being able to tell people that support is available

Need to learn from other examples in the UK

Lincolnshire has a ring-fenced budget for Carers



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 HOW/WHY

1. Virtual Carer Hubs Mutual signposting between Provider information/websites

Reduced duplication

2. Transition from Children’s to Adult Services

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

3. Emotional Support 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

4. Short Breaks (Respite) 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

5. Carers Learning 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

6. Access to Information & Services 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?

7. Reducing Social Isolation Befriending/Mentoring

Enabling circles of care

Enabling communities to give better support

Improved quality of life

8. Recognition of the necessity of holistic support

Supporting families to be independent in an environment that suits all the family

9. Support for older Carers

Emotional support

Physical support

Domestic support

Will need to be focussed on helping them think of the future & helping



them to recognise their requirements

10. One Stop Shop/Helpline 24/7 – would support better mental health for Carers Need an alternative to CAB for specialist advice eg benefits

11. Prevention & Early Intervention 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

12. Sandwich Carers Provision that recognises this growing trend

13. Equipment Better/quicker sourcing of equipment that may reduce the need for ‘hands on’ support

14. Awareness Campaign Greater recognition of caring roles

Raise profile of caring

Education for schools/communities/other professionals

15. Assessment’s Minimum standard that should be expected

Reduction in waiting times

Young Carers

WHAT HOW/WHY

1. Learning Carers Learning Credits

Discount Card

Improved support from schools, with additional time for homework, ‘time out’, improved emotional support

2. Healthcare Support initiated by healthcare professionals

3. Identity Support for the whole family

4. Engaging with Wider Community



Key Messages & Findings

Outputs Outcomes Evidence

Informing key stakeholders of LCYCP achievements

Highest number of attendees to a review event ever recorded. Evaluation forms indicate that attendees found the event helpful and informative. Positive comments from commissioners.

See Appendix A

Improve shared understanding of needs/viewpoint of each stakeholder group

Joint dialogue which explored the joys and challenges in order that each understood the others perspective boundaries and challenges.

Many comments from all participants, particularly about the powerfulness of the Young Carers testimonies

To help influence and co-design the Carers Strategy

15 potential areas for consideration

See Table Above

To re-engage and involve all stakeholders

Stakeholders felt included, 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.

See Appendix B

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

See Appendix C

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

Alzheimers/Care Support Team / Trusted Assessors

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

See Appendix C

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



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:-



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

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

Agenda Item

Welcome and Icebreaker 100% 0% 0%

Successes 90% 10% 0%

Partners 93% 7% 0%

Young Carer 100% 0% 0%

Workshop 1 90% 10% 0%

Workshop 2 87% 13% 0%

The Way Forward 97% 3% 0%

General Survey

Venue 80% 20% 0%

Organisation/Admin 97% 3% 0%

Communication 100% 0% 0%

Relevance 93% 7% 0%

Information Stands 70% 23% 7%



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 –


Agenda Item


Successes 91% 0% 9%

Partners 82% 8% 0%


Workshop 1 91% 9% 0%

Workshop 2 82% 18% 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

General Survey

Venue 91% 9% 0%



Relevance 100% 0% 0%




What the 6 Commissioners feedback shows as a percentage of the total responses –


Agenda Item



Partners 83% 17% 0%


Workshop 1 83% 17% 0%

Workshop 2 83% 17% 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 –


Agenda Item



Partners 100% 0% 0%


Workshop 1 86% 14% 0%

Workshop 2 100% 0% 0%


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

General Survey

Venue 100% 0% 0%





General Survey

Venue 86% 14% 0%







Summary of the 54 Responses:

76% (41) of the responses indicated all of the presentations were Excellent

85% (46) of the responses indicated the venue was Excellent

96% (52) of the responses indicated the administration was Excellent

98% (53) of the responses indicated that the communication was Excellent

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)



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.



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)



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



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.



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.



Appendix D – Example of event evaluation form



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LCYCP's Annual Review Evaluation 2013