CONTENTS

Overview2

Exercise One: Understanding the 5 outcome areas 3 – 11

Exercise Two: Over to You12 - 22

Wjhat type of support matters most to carers?23 - 24

What is driving you crazy?25

Feedback: How was today for you?26

Conclusion and Next Steps26

APPENDIX One

Joint Carers Commissioning Plan on a Page27

Overview

Cheshire East Carers Reference Group in partnership with Cheshire East Council, NHS Eastern Cheshire Clinical Commissioning Group (CCG) and NHS South Cheshire Clinical Commissioning Group (CCG)organised a half day workshop on the joint Carers Strategy.

The aim of the event was to enable carers and professionals from health, social care, and the voluntary and community sector to work together to:

  • Comment on the joint carers strategy[1] for Cheshire East to identify anything that is missing
  • Tell us how we can all work together to deliver what you thinks matters for carers in Cheshire East.

By collating people’s thoughts, experiences and ideas the commissioners from both the Local Authority and the Clinical Commissioning group’s will be able to take decisions that reflect carers needs in Cheshire East.

Exercise 1: Understanding the five outcome areas

The joint commissioning plan for 2013/15 includes ten joint outcome measures.

1)Improve the experience carers have when interacting with services

2)Increase the number of people represented on carers registers

3)Increase and improve the reporting of safeguarding incidents

4)Increase in the number of carers feeling supported to manage their loved ones’ condition

5)Reduce the number of unplanned hospital admissions of carers

6)Increase in the number of carers feeling they have been treated with dignity and respect

7)Increase the percentage of carers engaging in social or educational activities

8)Increase the percentage of carers who are in employment

9)Increase the number of carers identified as self-funders

10)Improve the information and support available to carers.

As part of the event, participants were able to focus on 5 key areas which are highlighted above.

The aim of the first exercise was to capture any thoughts in relation to the five topics outlined above. Participants were encouraged to think about the future in each topic.

Table 1: Carers Experience ( Improve the experience carers have when interacting with services)

Participants were asked to think about:

  • What is happening?
  • What are people doing?
  • How are they empowered?

Below is an illustration of the discussions that came out from the table exercise.

Table 2: Identifying “hidden” carers (increase the number of people represented on carers registers

Participants were asked to think about:

  • What is happening?
  • How are services making sure they find these carers?
  • How are these carers being supported on a practical and emotional level?

From discussions, it as agreed by participants that carers are valued, respected and empowered. Staff are empowered and motivated. They are working in partnership with one another. Some of the main themes that came out of discussions are illustrated below:

GP Surgeries

  • Same information systems
  • Communication
  • Carer Link
  • Resources

Hospitals

  • Registration process
  • Automatically generated

Schools

  • Changing attitudes changed in education

Acknowledge carer “status”

  • Raised profiles of carers
  • Changing social attitudes “careism”
  • Recognition of young carers

Other points raised were as follows:

1st contact is vital
Health/Social Care /any profession has access to appropriate information and understand it / Training is available.
Holistic overview of the contributions of other partners – ‘whole package’ / 1st contact needs to be followed up with check understanding and signposting, makes people feel valued yes I’m fine might not continue
‘Planning with’ not ‘doing to’ – staff need to allow carers to identify care and treatment together, appreciate who the experts are – bear in mind at first contact carers may have been caring for some time / Carers experience joined up health and social care services not telling your story over and over again. Even staff change / Continuity in support, alongside good communicationsretain and empower staff so they stay in the job!
Consider the impact of new people on the person being looked after and the carer. Trust and confidence takes time to develop. Consider how we commission to develop this / Time needs to be taken when handover length of appointment – and the carers choose! / Forward planning with GPs – reasonable adjustments. Listening and being guided by the carer
Receptionist prompts any special needs. Carers feel empowered to ask! / Carers are known and considered / In 2016 information systems act in a person centred way not constrained by Information Governance – getting the best outcome for carer and cared for person
When the carer opens up and articulates needs – they need to be met / Carers needs are as important as the cared for person / Clear signposting to information and support resources
Carers can access a range of care and support services / Carers training professional staff. They need to be paid for doing the training / Times/venues events – organise around carers not organisations
Peaks and Plains ACE[2]: Needs advertising / CARERS CHARTER (so carers know what their rights are)
One across all organisations CWP[3]have just produced one! / Mandatory training about carers for all statutory services – delivered by carers designed and (paying carers)
Discussions with employers via Chamber of Commerce about support to carers make this a co-operative exercise not a ‘I’ve got my rights’ type discussion / Use legislation e.g Mental Capacity Act to protect people not the system / Making better use of ‘circles of support’
Recognition scheme – share experience, expert references (carers awards)

Table 3: Carers supported to manage loved one’s condition

Participants were asked to think about:

  • What is happening?
  • What does the practical support look like?
  • How are carers finding out about managing behaviours and conditions?
  • How are they able to deal with difficult emotions and stresses?

Discussions focused on three areas:

1)Respite Care

2)Register of Carers

3)Passport

Respite Care was seen as a really vital element for carers to enable carers to re-refresh and have a break from obligations and chores.

  • GP’s should ensure that people know about this including “hidden carers”
  • Social services teams
  • Service providers

Register of Carers exists in 2016. There needs to be an initial meeting to sort out what is known / unknown and this needs to be repeated on an annual basis. A Carers Champion exists, which is one point of contact for the carer made up from a pool of organisations. With one point of contact, there is one central source for information.

Organisations should be together i.e. healthcare, social care, and voluntary sector organisations.

Form filling needs to be a minimum with “working documents” created.

Passport created for the carer that can be updated. This is a central document that has one point of information for all carers, including young carers. The passport is for all carers, including young carers. It should be about the carer and cared for person. It could list Power of Attorney and identify whether help is needed in terms of form filling, help with cooking, understanding of carer needs. A passport would be a mechanism to avoid repetitive assessments.

The top three priorities from discussions were:

1)A single point of information for the carer through one person

2)Passport for all carers

3)Everyone has access to a register for carers.

Table 4: Full and meaningful lives (Increase the percentage of carers engaging in social or educational activities)

Participants were asked to think about the following:

  • What is happening?
  • What are people doing?
  • How are services enabling carers to be included in education and learning?
  • What are services doing to enable carers to get out and about with their friends?
  • How are services enabling carers to make new friends?

In 2016, discussions agreed that carers know all they need to know for their caring role. They are creating meaningful lives for the people they care about. Carers can balance between caring, sharing joy, success, problems, work, and the carers needs.

Discussions on what a full and meaningful life looks like, are illustrated below:

Choice about what I am doing for me / Meeting friends / Leisure
Continuing to work – FLEXIBLE WORKING ARRANGEMENTS. Time as appropriate / An understanding employer/colleagues – responsibilities. / Planned time for carers priority activity
Support that is responsive to need / Venues have an appointed trained person to meet needs in location so that I can enjoy the activity and not be worried and burdened with equipment / Empathetic response from staff to meet individuals needs so that carer can relax.
Services which enable me to be me / Reliable back up system to respond when away from caring role / Friends of mine as an individual
Friendships developed through shared activity away from carers role and not feel guilty / Friendships created through work / I have access to transport
Finance cost of taxi / Accessible taxi / Dignity – not the odd one out / Treated like a valued customer
Pavements are wide and well maintained to enable me to move around / Able to attend as a couple (e.g. parents evening) / Fulfill normal life obligations without stress and ridiculous arrangements which require micro-management
I am allowed to feel that I have full value as a person and this is fostered by others and I am supported to value myself and build self-esteem

Table 5: Information and Support (Improve the information and support available to carers)

Participants were asked to think about the following:

  • What is happening?
  • How are carers getting information about their rights of the people they care for?
  • How are carers finding out what services are available?

Discussions came to the conclusion that in 2016, carers are working and learning. They have friends and social networks like everyone else.

There is good communication with joined up information. Carers can get consistent information from a variety of information sources such as:

  • Local information
  • GP’s
  • Social centre (big space, volunteers)
  • Shops
  • Library
  • Pubs
  • Welcoming churches
  • Existing support networks

Carers offer peer support and are partners in policy making decisions that affect carers.

Exercise 2: Over to you….

As part of the workshop, it was important to identify what projects, initiatives or ideas need to be:

  • Stopped – as they have limited benefit to carers
  • Continued – as they have benefit to carers and organisations
  • Started – as a new idea or initiative which will provide benefit to carers and organisation

Below are discussions in relation to what should be stopped for carers in Cheshire East.

Carer’s Experience
Carerism / Red tape delays
Disadvantages
Identifying “hidden” carers
Doing things to carers / REPETITION – of “telling your story” – assessments.
Developing policies that have been developed elsewhere
Concentrating on the service
Carers feel supported to manage their loved one’s condition
Over medicalising care / Services not tailoring their offer to the individual
Treating everyone the same! One size does not fit all! / Duplication of assessments and forms
Being sent to services that are not suitable
Carers living full and meaningful lives
Barriers to accessing support ‘jumping through hoops’
-several assessments. Trusted assessor for needs and breaks instead of separate assessment to access breaks / Hiring ‘Fun 4 All’. Find somewhere more
suitable where staff respect and value carers.
Head teachers discriminating not accepting children
with special needs.
Academy schools where the focus is on funding
and special needs pupils require support which costs money
Treating me like a 2nd class citizen
(and my loved one) / Making access for or contact by carers a problem or unnecessarily dis-guide.
Blocking carers by reducing their help
and support
Treating them as relatively inferior people/value their contribution
Treating me like I don’t matter.
Making me jump through hoops and
repeating myself.
Moving arrangements and expect me
to be able to rearrange support
Information and Support
Bureaucracy / Less conflict between carer and services who support them
Reviews are seen as a threat / Stop making things worse
Letter which makes you cry / If a professional doesn’t think the person
will understand. They should go down
that path.
Mistrust /
  • Deliberate – Misinformation
  • Out of date information
  • Denigrating carers
  • Making us wait - Poor transport
  • Ignoring the law – re: rights and
    responsibilities

Below, is an overview of discussions on what people would like to see more of within Cheshire East, in relation to carers.

Carer’s Experience
Matching need / Right decisions with commisisoners
Train carers to identify carers / Carers alert card – advertising of this
Not to go assessment crazy
Identifying “hidden” carers
PATHWAY PLANNING – so thinking ahead about future needs / Trust between carer and professional – 2 way street
Raising awareness in schools / colleges of young carers issues to allow support to be offered / Emotional support to grieve – not just at points of bereavement – but at any point of loss. Coming to terms with change – positive or negative.
Assessments being carried out by trusted
assessors rather than statutory organisations
Carers supported to manage loved one’s condition
Carers personal budgets
Carers living full and meaningful lives
  • To elevate carers and their views to the best possible
    place in priority
  • To listen carefully to their views and opinions
  • Value their time and energy to capture
    what can be learnt from them and their experience
/ The carers register by making it compulsory for GPs/Practice Nurses etc to put people on the Carers Register.
This should then trigger a process/stream of information,
advice and support for the carer relevant to the needs of their loved ones condition. An annual carers assessment would identify if that person is getting all the support / resources they need to live a full and meaningful life for themselves and the/with cared for
  • Dementia principle – message boards
  • Communicate understanding and learning of
    experienced carers
  • Carers relaxation day
/
  • Flexible support for working carers offer out of hours
    appointments – same access to service
  • Carer breaks (personal budgets) giving carers the
    opportunity to access breaks when it suits them, not
    traditional groups if not needed (individual choice)
  • Timed sitting service to establish routine of breaks for
    carers and give opportunity to ‘dip toe in the water’,
    build on this, trust with other services

  • Carers relaxation day
  • Carers groups for exchange of ideas and socialising
  • Accurate information on website or help-line
  • 24 hour emergency respite service (not just a card)
  • Carers register carers celebrated

Information and Support
Needs to be flexible / Actual professionalism from professionals i.e.
full accountability and responsibility for own actions
Staff need to be empowered to / Compliant need to feed back
Real life stories

Below are discussions on what new ideas, projects or approaches need to be initiated in Cheshire East.

Carer’s Experience
A local offer for carers
Local parents PB single plan / Identifying need
Make the carer role COOL! / Press releases
Marketing “Proud to be a carer” / Take away fear of being taken away
Treating people as equal / Lobbying MPs and government
Identifying “hidden” carers
Working with us!! / Concentrate on the person and including the
carers in decisions
Recognition scheme – share experience,
expert references
(carers awards / Discussions with employers via Chamber of Commerce about support to carers. Make this a co-operative exercise not a ‘I’ve got my rights’ type discussion
Mandatory training about carers for
all statutory services – designed and
delivered by carers (and paying carers) / CARERS CHARTER (so carers know what their rights are)
Briefing for cabinet/councillors about
carers issues / Info systems should be designed by the people who use them (practitioners and service users including carers) and not just picked off the shelf
CEC Carers DVD to highlight issues. Encourage hidden carers to come forward show at GP practices, cinema,
employers / Peaks and Plains ACE: Needs advertising
Carers supported to manage loved one’s condition
Sharing information quickly. Patient information to enable conditions
to be treated quickly / Educating people how to better use services which are already available
Services need to be commissioned that
meet the needs of the population / Planning for a crisis needs to happen early to ensure people feel empowered and service don’t repeat actions that don’t help
If the initial plan is augmented by a carer passport, the carer will only require professional help when amendments to the passport are required. / Organisations talking to each other and
working together, having systems that
speak to each other. For the benefit of
the carer
Carers living full and meaningful lives
Treating carers as really critical valued contributors.
Telling them how they are important and valued
listening carefully to carers views/problems etc.
Identifying carer opportunities for real understanding
and empathy / Recognising the contribution I make to Society (and the economy) by caring.
Giving carers all the information, support and resources they need for life (not just existence) to continue as before illness/or as for other people, as valued people. (if no2 is in place this would
answer no1)
  • Carer radar’ service – low level service for carers
    not identified as needing anything ‘yet’ –
  • Three, six, nine month contact.
  • Carer advocacy/buddy service to ease new
    carers into services – e.g. first appointments,
    show around caring world
Caseworker ‘lead professional’ for whole support liaison. /
  • Support and share website with panel of expert carers
  • Recruiting and Training more volunteers.
    Offer them incentives
  • Have disability awareness or deaf awareness
    training for museums, banks, companies
    and schools
Training council staff to appreciate what the caring experience is really like
  • Recognising the journey that carers make –
    changing states/emotions along the way.
  • Find ways to communicate carers story and learning.
  • Website panel of experts to consult.
  • Set up helpline – Ask an expert 3
  • Celebrate value of each individual carers
  • Carers register
  • Make a good video for use in training
    celebrating carer role.
/
  • Being more pro-active in communicating
    services/resources for carer that are available.
  • Return to carers who do not take up services
    offered at first contact, as they may not
    be able to engage so soon after assuming
    caring role.
  • Befriending/buddy up experienced
    carer with a new carer
  • Treated with respect by organisations.
Single point of access
* Named contact/liaison
* Take responsibility for interaction
Information and Support
Information 2 way street / Consistent information
More honesty from professionals
Build Trust in what they say is
best for them / Quality
How are carers supported to achieve
personalisation and ensure this is sustainable
once carers own health needs change
More consistent approach
starting positive / Co-operation not confrontation.
Assumption of Trust.
Carer should be trusted
  • Listen more to the unpaid carer
  • What matters to the individual
  • Do not fit people into the system as it is. Paid carer should also be level
    (please check this)
/
  • Full recognition of the individual carers
    difficulties
  • Giving out comprehensive accurate
    information at first need
  • Truthful response

With you and for you. Pulling with you. / Leadership is important

After discussions on how what needs to stop, progress and continue in Cheshire East, participants were asked to collectively vote on what was important to them.