Norfolk Locality Group -asking what carers in Norfolk want

[wendy]

The event that I went to at Costessey
You will see we have got a mention
Locality Events for Carers

This paper provides an overview of the feedback and key themes collated from across the  events held during September 2012.

The events were set up to enable carers to feed into the process of designing new Carers Support Services and the development of a service specification for these services.  A group of carers were involved in planning the format and content of the events and a workshop session was held in the morning with an informal drop-in session for the afternoon where carers were able to review and comment on the work from the morning session. The questions used in the workshop sessions were based on the key themes identified by carers in The Strategy for Carers in Norfolk 2011 – 2014 and the responses have been used to shape the new service specification. Where issues were raised that are not directly relevant to the new Carers Support Service, we will ensure that these are passed on to the appropriate individual/organisation for consideration.


Q1:  How do you want to find out about help available to you?
Information should be:-
• Easy to read/understand with no jargon
• Up to date
• Given in an information pack at the hospital prior to discharge or at “crisis point” when the care role commences
• Available at out-patient clinics where the carer might be attending an appointment with the person they care for
• Available through a single point of access – one number
• Obtained through the most appropriate source – depends on the issue
• Streamlined so that information is available from a few expert sources
• Available through services that support the cared for person
• Available from Employers
• Available via a helpline
• Available through letters to the carers
• Not just available through carer organisations but also via independent specialist support groups e.g. Alzheimers Society, Arthritis UK, Age UK

Multi-Media
• Available in Braille and audio (talking books)
• Available on CDs/DVDs
• Available in alternative languages
• Through teleconferencing, eg Chill4Us – carers who have met on line share information
• TV channel based information (local County channel in development)
• The Carers Yellow Handbook should have all the information and be available on line as well as in GP practices. 

Available in GP Surgeries
• Available in GP surgeries.  GP surgeries could act as “hubs” for information
• Leaflets and information.  Carer support packs
• GP based carer support worker – specific days/times when a carer advocate would be there
• Carer support worker available during surgery clinic time – e.g. hearing aid clinic when carers often accompany the cared for
• GPs need to be have up to date information and be proactive in distributing it

Available in the community
• Available in town centres
• Information/leaflets should be available in schools, supermarkets, post offices, buses, libraries, pubs, village halls/community centres and town centres
• Through local Parish/community magazines, newsletters and newspapers. Newsletters should also have regular key themes, eg Mental Health
• “Your Norfolk”  NCC County-wide publication
• Disseminated through District Councils
• Public adverts and events including speakers
• Available in formats for people who do not use computers/internet
• Through face to face contact – better than the confusion of phone lines/call centres and “press 1,2,3,4 etc”.
• Given by the people who visit you at home
• Available from social workers, community health professionals, support workers
• Opportunity for drop in sessions in smaller towns
• People who are networkers/know the area/community or have been in a similar situation

Technology based
• Social Networking, including a dedicated Facebook page for Norfolk Carers
• Have a  dedicated NCC web-page – would be useful to be able to subscribe to receive information and updates
• On line  “Norfolk Support Group for Carers” (accessed via NCC website) – there is trust that this information would be accurate
• “Time for Me” website
• Creation of a Norfolk register of carers – multi-agencies could use this as a means of contact to disseminate information.  Could be linked to grant-based databases
• Carers Apps –  for all phones not just i-phones
• Pop-ups when on line for instant chat
• Email and text messaging

[wendy]

Q2: Would you like to take a break?  What would help you to do this?

• Financial help – Money is a barrier to taking a break. Shouldn’t have to pay for a carer
• Paying for respite services is a problem
• Family fund help for family breaks – support stops at age 18
• Concessions for carers – admission fees to theme parks, cinemas, zoos etc
• Breaks should be built into the budget for the cared-for person
• Building breaks into support plans – regular breaks rather than “one offs”
• Being able to book short breaks in advance
• Organisations  need to be more flexible – especially when the break is needed at short notice
• Use newspapers to advertise what options are available and where
• Often difficult to find organisations to provide care
• Need information about what breaks are available,  what the costs are and how often they can be taken
• Opportunities for breaks that are more imaginative/flexible rather than traditional models
• Easy access to short breaks for families and carers
• Being able to take a break together
• Being able to do things together – e.g. singing groups and other activities that can be shared by both carer and cared for.  More information on these sort of activities and concerts etc.
• Access to Equipment to support going out
• A local register of accredited “trusted carers” or accredited carers might be better than respite care.  Need to feel confident about the quality of day/respite care.
Need to be able to trust that the carer is doing the right things i.e. understand and encourage what are good/positive behaviours and what are not – e.g. mental health/bi-polar disorders
• Outreach support – trusted point of contact
• Breaks available during school/college holidays
• Assessments for respite care can mean that the service is not available
• Ability to use residential care homes for breaks
• Confidence in the quality of day/respite care
• Respite options needed for people with LD who can no longer access bed-based services (e.g. Faro Lodge)
• Good quality respite centres, including options for people with complex needs
• Pets need to be included
• Holidays/outings in groups
• Do some things as a family with a bit of extra support
• Transport to get to places
• Help in arranging a break – especially where carer also has a health condition so that both carer and cared for would need assessment and arrangement of care
• Additional “hands on” support with the mundane tasks to enable carer and cared for to enjoy the break or activity. 
• Night-time breaks would be good
• Building relationship with respite service so that carer can call at short notice/urgent need
• Need to recognise that sometimes the cared for person doesn’t want anyone else to look after them
• Local opportunities to reduce social isolation – coffee mornings, lunch groups etc., with subsidised meal and a guest speaker (general interest, not about caring)
• Befriending can lead to peer support, information and shared interests
• Having a break in your own home – Support worker/PA to do the chores and the personal care
• Reciprocal support between carers or from other family carers who could offer care at weekends to provide care in own home
• Day services offer time for self – not operating for long enough.  Extend hours, offer more flexibility
• Short breaks at Short notice (Crossroads) – ensure that carers know that this service exists
• 48 hours allocation for short breaks is not enough
• Social Services HUBS for networking

[wendy]

Q3:  What would help you to stay healthy?

• Reduce Stress!
• Cross cutting issues – if other things/services worked, stress would reduce
• Reduce bureaucracy
• Single point of contact, easy to remember number, ability to get through to efficient staff
• Reduce waiting times – appointments for social workers, clinicians, education department, carer assessment
• Better support for carers/advocacy
• Being listened to and being able to influence e.g. these workshops
• Improved support for carers with financial issues – struggling financially
• Funding for voluntary organisations to provide services to support carers
• Improve information and signposting
• Improve public perception of carers
• Improve recognition of the carers role – the triangle of care used in Mental Health is a good example
• Improve communication and recognition at GP surgeries
• Safe home – assessment of and  advice on home safety
• Practical help with shopping, laundry housework etc.
• Training - Caring with Confidence Course (no longer available in Norfolk), First Aid, Handling medication, lifting and handling
• Training in caring for specific needs – e.g. Dementia, Parkinsons, Mental Health
• Health and wellbeing courses
• Stress management and medication
• Regular Breaks
• Not all carers want to go to groups
• Opportunities to go out,  let it all out and be “Me”
• Being able to follow own interests
• Contact with “normal people”
• Discounts for attendance at leisure facilities, gyms, slimming classes etc
• Improved leisure facilities – swimming, etc
• Yoga – can practise at home following a small amount of training
• Relaxation and access to relaxation therapies in the home as well as at other venues
• Short “taster courses” (Adult Ed)
• Learning Grants – continues these but with greater flexibility over the grant amount and transport costs
• E-learning opportunities
• Replicate the positive/supportive approach from adoption services – proactive because of legal responsibilities.
• Advice and guidance on healthy eating on a budget, also food hygiene
• Training in how to cook quick, easy and healthy meals
• Access to a cook – someone to talk to  but also a meal prepared for that day and the next
• Subsidised access to slimming classes
• Equipment to support going out
• Reducing social isolation – local carers groups and other support.  Relationships with friends and family can change
• Self-management plan – record daily to help identify warning signs and take action – being aware of where you’re at physically, emotionally etc.
• Self-help using carers skills in local communities
• More empowerment of the cared for
• Parent Groups
• Help in preparing a young person who is leaving home
• Increase funding for carers groups - £150 is not enough

Role of GP surgeries
• Improve communication at GP surgeries
• GP systems should identify/register carers and hold appropriate information
• GPs need to recognise carers and the needs of carers and give time to carers
• GPs are often very caring but don’t know how to help
• GP Carer Advocates (Pilot in North and East)
• Annual health check for carers
• “Well Carers” clinics (like Well Woman or Well Man)
• Home delivery services for medicines and repeat prescriptions
• Ensure carers receive flu jabs

Q4:  What help do you need to make life easier for you to manage in an emergency?

• Easy access to information and advice about what help is available
• Simplified referral processes and systems – finding your way through NHS and Social Care
• A joined up approach.  Systems are so patient focused, they miss out the needs of the carer especially in mental health
• Quicker access to carers assessments/recognition of need
• Support plan for cared-for person should include emergency plan and take account of carers needs
• Build in contingency to the personal budget
• Funding/ help from Social Services
• Recognition that carers are individuals, and the role of that person in community, as husband/wife/partner/parent
• Social workers who listen to what carers identify as needs and use this as the starting base
• Continuity of social workers, especially if social worker is out/on leave/off sick
• Annual reviews of care services/packages
• Being listened and feeling valued
• Expectations of carers are very high – people need to learn how to be carers
• Use of media to promote social understanding about the life of being a carer
• Need to understand how to access the Specialist Dementia Practitioners service (N&S MHFT)

Prevention and Home Support
• Training for carers prior to hospital discharge
• Being able to be a family and maintain independent activities
• More support – formal through GPs and informal through peer support. 
• A carers’ support co-ordinator
• 1:1 carers support workers for over 16s
• Support groups – including separate support groups for young adult carers (18-24)
• Support for the whole family; support to prepare for possible emergencies; access to short breaks
• Safety in the home
• Community alarms/telecare/key safes. Immediate response needed if alarm goes off
• Equipment – delivered promptly in an emergency at point of need by a named taxi/courier service
• Signposting to different services and knowing what options are available
• Practical help – laundry, shopping, cleaning, gardening, decorating, de-cluttering etc
• Access to a network of local “trusted carers”
• Relief break – even for an hour or two
• Options to meet people in similar situations
• “In my Place – good service but a problem if the back-up carer backs out or is no longer available.  Profiles need to be kept up to date
• Swifts and Night Owls
• Trusted Trader – good idea and source of information
• Suitable housing options consideration for the carer and  the cared-for
• Improved treatment and care for the cared for would make emergencies less likely
• Emotional Support, 1:1 counselling/on-line or telephone support – community alarm option for carers who may have emotional emergencies
• Better support in transition for the 18 – 25 age group
• Parents of children with LD need access to better support
• Support needs to extend to past carers where the caring role has ended/changed
• Employers being more “carer aware”
• Independent financial advice

GP Services
• GP flexibility – emergency appointments available not just in the mornings
• GP time for/recognition of carers
• GP to be trained to deal with situations if they come to their attention

Q5:  How would you like to find out about help with income, benefits or work opportunities?

• Single point of contact for advice
• Access to expert advice and knowledge on benefits, what benefits are/will be available and what benefits will carers lose and why/at what point, the impact of earnings on benefits, helping with the completion of forms and payment of bills. 
• Advice and information about benefits needs to be available at point of diagnosis
• Advice and Information services are usually in town centre locations.
• Ask booklet but an on line version
• Speakers at Carers groups
• “Speed-dating” style sessions - Q&As on these subjects
• Face to Face support would pick up other issues
• Information Pack – but where should this come from?
• Information needs to be up to date and reliable
• On discharge from hospital there should be access to a benefits/allowances check
• Information on income/benefits should be given at the carer assessment.  Need to ensure that people receive a carer assessment
• Benefits advice –Debt advice
• Help through Carer support workers who could also assist with completing forms
• Need clear advice on the responsibilities of the carer and of the authorities
• Information on services for carers that are not means tested
• CPNs, social and support workers should be able to give advice
• Support for the self-employed
• Advice on Personal Budgets
• Application forms are too complicated
• Working opportunities need to be accompanied by policy change
• There is no help for carers who work but help for those who are not in work
• Networking – other parents and carers
• Carers benefits stop at retirement however caring doesn’t

Help people to get back into work
• Signposting to voluntary working opportunities as a trial for paid working
• Support to increase activities/opportunities for own life when caring reduces or stops
• Home-study courses, including options for GCSEs and BTEC
• Grants for study courses – more flexible on the amounts
• ESA/Bursaries information (available through schools)
• Access to training to stay in touch with workplace/market
• System makes it difficult for carers to work - inflexible rules about carers allowance, what can be earned monthly etc.
• Training to get back into work – current schemes are not flexible enough
• Support for people wanting to start their own business
• Information about free courses – help to stay in touch with working life
• Use carer skills to support others – as a job

Employers Should
• be more aware of carers needs and rights and have more carer friendly policies.
• support carers to stay in work
• not discriminate against carers in the workplace
• Include carer’s leave from work (this is essential)
• build in greater flexibility and more part time opportunities
• not discriminate against carers


GP Surgeries
• Acting as a hub for information, advice and guidance
• GP based carer support worker/well informed professional

[wendy]

Q6:  Are there any specific issues or challenges faced by carers in your local area?

Rural Areas
• Rurality = having to travel to nearest town to access services and support
• Rurality = lack of choice  - NHS Services, Dentists, care services
• Rurality = Isolation
• Lack of leisure facilities and general facilities
• Poor internet access in rural areas
• Need more groups in local areas
• Shortage of social workers and loss of named contact/continuity of support means repeating information
• Not enough staff to undertake carers assessments (West Norfolk)
• Training for carers difficult to access in rural areas
• Training on the use of equipment – Mobility Scooter school very useful but not easily accessible in rural areas

Local Networks
• Encourage use/creation of community hubs
• Support from Carers Council to set up local groups
• There are gaps where no carers groups exist – i.e. Watton, Thetford
• Funding is needed to support local groups
• Lack of free/reasonably priced pleasant venues for carers groups (affecting attendance) especially in the East
• Create networking between local groups – interaction
• Access to group meetings – times and locations not always convenient
• Need to rotate services and support groups in rural areas around towns/villages
• There needs to be more on-line support as well as face to face (e.g. Chill4Us)
• Lack of services for young people in transition
• Lack of cover/services for school/college holidays
• It’s difficult to get carers  together in Norwich
• Support networks – reliance on neighbours in an emergency
• Need for groups/activities where carer and cared-for can attend together
• Strategies to attract new carers to the local carer groups

Transport
• Transport – particularly for older people who don’t drive
• Public transport issues particularly in South Norfolk and West Norfolk – Information pack needs to include service information and whether transport is accessible/suitable for wheelchair/mobility scooter users
• Travelling/distances prohibitive
• Need for better community transport schemes
• Voluntary service provided transport schemes
• Review community transport schemes and their role in supporting carer and cared-for
• Funding for transport to get to local groups (free bus pass for carers not just when accompanying the cared for)
• Services/outreach for people from BAME communities (e.g. E. European in West Norfolk)
• Carers breaks need to allow for travel time in rural areas


Some general comments made were
Q1 – Information

• There needs to be recognition that caring is a pathway/journey and that needs of carers change
• Care Connect need up to date information to hand – this is not always the case
• The yellow Carers handbook doesn’t include information on Dementia
• Information needs to include planning for the futre
• Using the telephone to obtain general information is OK.  Should not be used for assessments.  Unable to see  the environment or the carer’s physical/mental/emotional status
• Obtaining information should be as easy as the MacMillan pathway – i.e.    diagnosis – one number to ring – referral/help
• Policy changes need to be given a greater profile
• Glossy websites cost money which could be better spent on carer support services

Q2 – Taking a Break
• Sometimes the cared for person doesn’t want anyone else to look after them
• Quality of care services/providers and governance and safety of these services

Q3 Staying Healthy
• Disabled facilities at Riverside Leisure Centre are not satisfactory

Q4 What help do you need to make life easier for you to manage in an emergency?
• Workshops for people who run carer groups – experienced local organisation to lead
• NHS needs to learn to communicate with patients and their carers
• NHS Pathways need to be simplified
• Services don’t seem to be joined up – Nothing seems to be co-ordinated
• GPs/practices need to be more aware of carers needs and what support is available

Q5 How would you like to find out about help with income, benefits or work opportunities
• Job Centre is not a helpful point of contact
• Carers need to know that the Disability Living Allowance can be used by carers to pay for a support worker
• Can more funding be made available to ensure  that carers assessments are carried out?

Q6 are there any specific issues or challenges faced by carers in your local area
• Discount/Concessions card for carers would help carers to have greater access to leisure opportunities
• Difficulty in accessing appropriate support in rural areas

[wendy]

This project will have cost NCC thousands and thousands.
The responses above were collected from carers around the county.
Norfolk care is going to put out to tender later this month and then companies will be interviewed in January.
The answers above from carers will be part of the interview questions.
thank you to whoever took part.  I went to the Costessey group.