Camden Carers’ Voice
9th February 2015
Attendance: / 24 carersDr. Sophie Bellringer, Clinical Psychologist
Bob Dowd, Family Support Manager, Centre 404
Angela Edwards, Family & Carer Support and Information Worker, Camden Carers Centre
Richard Elphick, Strategic Commissioner – Mental Health
Dr. John Hanna, Consultant Clinical Psychologist/Lead Psychologist for Acute Division, Acute Division Clinical Psychology Service
Debra Holt, Programme Lead for Mental Health Transformation, Camden Clinical Commissioning Group (CCG)
Councillor Alison Kelly, Chair of Health and Adult Social Care Scrutiny Committee, Camden Council
Shelly Khan, Community Engagement and Volunteer Manager, Camden Healthwatch
Allegra Lynch, Chief Operating Officer, Camden Carers Centre
Beth Smith, Carer Engagement and Outreach Coordinator, Camden Carers Service/ Centre404
Deborah Wright, Head of Social Work and Social Care, Camden and Islington NHS Foundation Trust
Deborah Wright
Q&A and discussion / Camden and Islington mental health trust has five divisions:
· Acute services
· Substance misuse services
· Anxiety, depression and complex disorders, trauma
· Rehabilitation and recovery (R&R)
· Older people – ageing and mental health
These teams are made up of care coordinators and peer support workers with lived experience.
The Carers Strategy needs review – Deborah will be working on this.
Triangle of care:
Service user
Carer Professional
Key elements of the triangle of care:
· Carers and the role they play should be identified as soon as possible, ideally at first contact
· Staff should be aware of carers and what they do and should be trained to work with and involve carers
· Organisations should have policies on confidentiality and information sharing
· There should be defined posts responsible for liaising with carers
· An introduction for carers to the service should be available. Deborah has started to think about how to improve this.
· Range of carer support services – Camden Carers Service.
They are developing the carer page on the website
The Care Act will mean that Councils and Trusts have a duty of care to give carers a Carers Assessment. They will also be looking at the quality of these assessments.
Question/comment from carer: I have heard a lot of talk about carer involvement over the years but will it happen in practice?
DW acknowledged that there have been staff challenges.
Question/comment from carer: This has been going on for a long time – needs root and branch change.
Question/comment from carer:
· Two out of three nurses have lost their jobs
· The triangle of care hasn’t been followed by Camden
· There have been avoidable deaths including of a carer.
· Hope that good staff will put their foot down and ensure improvements.
Question/comment from carer: We have had great experience of the crisis team, until recently when the family was treated as hostile.
Response (DW): When it was working – what was it that made it work?
Carer: All working as a team – family, person with mental health problem and professional
Response (DW): It sounds like it’s been the ‘recovery approach’ (working on someone’s own volition) gone wrong
Carer: Through Angela (at Camden Carers Service) they got help
Angela – Camden Carers Service is working with others to update the carer part of the website. Sometimes the triangle of care isn’t working, especially around communication between carers and professionals.
The carer above found that professionals didn’t want to hear what the carer was saying.
Camden Carers Service has been trying to get carers to ask for care plans of cared for.
Question/comment from carer:
· Has called crisis team and been advised to call 999
· We’ve heard all this before about carers
· There are cuts but what about cuts to high up salaries and what about investment in good front line workers?
Response (DW): Doesn’t doubt frustration, will try as hard as she can
Question/ comment from carer:
· There are promises but there are avoidable deaths
· The Trust is failing us
Response (DW): In the media there aren’t the success stories – there are people who get the right support at the right time.
Question/comment from carer: The system isn’t good enough to deal properly with those who are chronically unwell.
Question/comment from carer: Problems – lack of care where the services meet up
Question/comment from carer: Is it your right to have the loved-one’s care plan?
Response: Yes if loved-one consents
Carer: However, in practice it can be difficult to get
Question/comment from carer: How often do carers get a Carers Assessment?
Response: Annually but could be more often if your caring role changes
Question/comment from carer: If someone leaves hospital (absconds) the police deal with it.
Issues around hospital listening to carer view
Response: The acute service and the police have done some work around when people leave hospital and are then reported missing – leaving must be properly agreed, better assessment, recording where they go etc.
Question/comment from carer:
· Life changed when they had a social worker involved. Concerned about move away from social workers (care coordinators don’t have to be social workers).
· Has seen hospitals deteriorate – seeming more like prisons.
· Improvement (in a person’s life) can happen but people need the right services.
Question/comment from carer: Carer been told that crisis team can’t do anything re medication as the person themselves needed to call.
Response: will be doing supervision and appraisals to help keep social work team stable, and creating more of a structure with different roles for people to aspire to (while still doing front line work). / Beth: Send out Triangle of Care document to attendees
John Hanna / There is a national shortage of acute beds.
There is a national shortage of accommodation, leading to people requiring accommodation remaining in hospital. Nationally, patients are being placed out of area due to bed pressures. C&I (Camden and Islington) share the same difficulties experienced nationally.
In C&I, four whole-time equivalent psychologists work across:
· 10 wards
· 4 crisis teams (2 are co-located)
· 2 crisis houses
· 2 acute day units
The psychologists prioritise clinical work, including family work involving carers, work with high caseloads and turnover, and at present have little or no time to train staff.
They see people weekly and where indicated provide up to two sessions after discharge, as it can be a high risk time when 24 hour care stops and someone moves to community care.
There are also national challenges with recruitment of nurses, especially in London.
In 2012 the Trust underwent a reorganisation reflecting a change in national strategy for the NHS. The Trust’s Acute Division is giving renewed focus to implementation of the Triangle of Care. / Beth – send round document John wrote
Debra Holt / She manages the transformation agenda in Camden CCG (Clinical Commissioning Group) around mental health.
In 2013 the CCG did a mental health review which included listening to services users, carers and professionals. This then led to a five year plan. There is £16 million of additional money.
There has traditionally been less investment in prevention and self-management so they want to focus more on this.
They want a coproduction, bottom-up approach
They sought to recruit two experts by experience, a service user and a carer. Initially they recruited a service user but not a carer. However, they are now about to recruit a carer who will work to make sure that carers are engaged with.
They have commissioned:
· A large education programme. Rethink are providing awareness training.
· GP training around alcohol specifically. This training is around identification of people who need support and around responding better to people with anxiety and/or depression who present often at the GP surgery
· Big White Wall online network
· ‘Team around the practice’ – working out of GP practices, from April 2015
Over the summer they will be looking at how to respond to crisis better and looking at the crisis pathway.
Richard Elphick / He is a joint commissioner for mental health. This means commissioning with health and local authority money.
1 in 5 people in Camden have a mental health issue. (It’s 1 in 6 in the UK as a whole.)
Commissioning used to be mainly done using insights from demographics (i.e. looking at the makeup of the population).
However, it’s also important to involve people and to consider questions around what we currently have, what we want and what skills people have.
Forums like this (Camden Carers Voice) are part of this conversation.
Wants to have a conversation about ‘what we can do together’.
The situation now:
· When people are getting services they tend to be good services
· There isn’t enough about building good communities (so don’t have to lean on state and carers as much)
· Access to services is clearly key and knowledge/ expertise of carers must be recognised (e.g. if they say their loved one needs help)
Wants to commission from a hopeful point of view – in terms of people’s ability to grow and develop – but with balancing it with being realistic.
We know we lean heavily on carers – it needs to be more mutual. Carers must be listened to and supported with their own needs.
They have some funding around prevention
You can get involved to shape the development of preventative support in Camden: https://www.wearecamden.org/mentalhealth/
Shelly Khan / Camden Healthwatch is a charity that started in 2013. Its key remit is to work with local communities around services.
Mental health work:
They held stalls in Queen Crescent and did street surveys.
They heard that people need better discharge plans for leaving hospital and better access to support services in the community after hospital. (People may end up back in A&E if they don’t have help/ services).
They broadened it out further and spoke to 319 people who wanted –
· Better services from GPs
· Better explanations of medications
· Better support in the community and information on what is available
Black and minority ethnic communities:
· There can be stigma around mental health
· People don’t always feel services are set up to support a diverse community, and there’s a fear of losing the support that is used within communities.
· Need to be proactive – working with communities to come up with ideas
· Not all communities use services proportionately
Welcomes hearing from people.
Councillor Alison Kelly / Two documents that may be of interest:
· ‘The NHS under the coalition government. Part one: NHS reform’ [http://www.kingsfund.org.uk/publications/nhs-under-coalition-government]
· ‘Never Again’ by Nick Timmins [http://www.kingsfund.org.uk/publications/never-again]
Adult Social Care and health are brought together for Scrutiny as they’re so interlinked.
The Scrutiny Committee is meant to be about accountability. They can make any provider come and answer questions.
2 out of 5 meetings will be on mental health as it came up as the most important issue when the public were asked.
Councillor Kelly explained that she had personal experience of caring, having cared for her child with special educational needs, and for her mother.
Scrutiny isn’t run on party political lines. It’s about what the key questions are.
In November they spoke to the CCG about the May CQC (Care Quality Commission) inspection. They didn’t get all the answers they wanted so they are having them back next week.
There are always people from the community in the meetings. They can’t be interrupted – the professionals must listen.
Q&A and discussion / Question/comment from carer: Where/ how does dementia fit in?
Response: In the unit for ageing and mental health. The memory service should help with early identification and support. It was partly set up to respond to people being batted between services/ departments.
JH – concern that there may be less cross service collaboration
Question/comment from carer:
· Can refer failing trusts to Secretary of State
· Loss of community psychiatric nurses
· Impacts of cuts of services and staff
Response (JH): My team works hard. There is a risk that good psychology staff will leave to join the private sector. We’d all like more support and money from central government.
Question/comment from carer:
· Around need for guidelines on confidentiality
· Low levels of empathy from GPs. Their management of confidentiality and data sharing too.
o Response (DH) – Need for training (they’re generalists not specialists so need support)
· As carers get older they need time for a gradual process of ‘handing over’ the care of the person they look after, to services.
· It can be hard enough if you speak English well. It must be very difficult for people who have arrived from elsewhere.
· Impact of bills sent etc. (Can be very upsetting to receive)
· Crisis team are weak but have helped. Private contractors should support them with developing strategies, plus police.
· Importance of empathy.
Responses:
· RE – police have been involved in discussions around crisis
Carers often find ways of looking after themselves.
Need someone in GP surgeries with mental health training (and in police).
Question/comment from carer:
There was a switch from institutions to ‘care in the community’ – but not enough thought was put into this replacement (i.e. the community care).
JH –
• The Trust is working toward reducing, ultimately ending, its use of agency staff
• Psychology waiting lists in the community are coming down.
• Improved interpreting service
• Seen more GP trainees coming through acute for 6-9 month training
DH – integrated approach with social care and health.
AK – what she hears does impact on what is said in scrutiny.
The Dutch model – where people are paid and trained properly – is cost effective.
Dates for your diary / Sunday 22nd February: Book sale – Centre 404, 404 Camden Road, N7 0SJ, 12-2
Monday 23rd February: Scrutiny meeting, Town hall, Judd Street, 18:30
Wednesday 25th March: Kith and Kids conference on the Care Act [http://www.lukeclements.co.uk/wp-content/uploads/2015/01/2015-KKids.pub-51.pdf]
Thursday 23rd April 2015: Camden hustings – Council Chambers, Camden Town Hall, Judd Street, London, WC1H 9JE, 10:30 – 13:00
Final thoughts / John Hanna:
Hears that carers are observing the work we do (rather than working with us)
Hopes that carers hear that staff are under enormous pressure, firefighting, struggling, but doing their committed best
Staff and carers must find resilience
Must keep trying – work collaboratively, at least make small changes
Feels like next step to the meeting would be to start afresh and jointly commit to collaborative working, putting forward constructive, workable ideas
Debra Holt:
Is going to be working on crisis services. It’s important to get everyone’s views in there when crisis work is being remodelled.
Richard Elphick:
Responsiveness is clearly a key area where there have been problems, e.g. picked up phone to call someone but not an acceptable response.
Wants service users and carers to be recognised as experts.
That will help us to avoid crises.
Alison Kelly:
We need to continue having carers as part of holding public bodies to account – by asking right questions – professions will hopefully reflect and act upon these.
Dates for future meetings: / Thursday 30th April
Tuesday 14th July
Meetings run from 10:00am – 1:00pm.
Refreshments from 10:00am. A light lunch will also be provided.
CCV