Duty to Care?
Supporting and involving unpaid carers of people at the end of life
Thursday 10th October London Marriott Hotel Regents Park #DutytoCare
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• @DyingMatters • @SimonSimply - Director of Public & Parliamentary Engagement, NCPC
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...for funding bursary places so that unpaid carers can attend this event
Carers and caring at the end of life Whose rights and whose responsibilities?
Dr Moira Fraser Director of Policy and Research, Carers Trust
© Carers Trust
www.carers.org www.youngcarers.net
What we know Half a million people die every year in the UK Assuming one person is looking after each person, then that’s at least half a million carers. Carers are of all ages and all backgrounds 3 in 5 of us will be a carer at some point in our lives.
© Carers Trust
www.carers.org www.youngcarers.net
Carers have their own needs • Most carers don’t self identify - often crisis leads to identification • Huge physical and mental impact • Despite huge efforts and some improvements, GPs still not good at identifying and referring carers for support • Carers assessment often happen late and in the case of end of life issues, too late.
© Carers Trust
www.carers.org www.youngcarers.net
Prepared to care? Carers week Survey 2013 • Seven out of ten (75 per cent) carers were not prepared for all aspects of caring. • Eight out ten (81 per cent) carers were not prepared for the emotional impact of caring. • Eight out of ten (78 per cent) carers were not prepared for changes to their lifestyle because of a caring role. • Seven out of ten (71 per cent) carers were not prepared for the change in relationship with the person they care for. • Just under two-thirds (63 per cent) of carers were not prepared for the impact caring had on their career. • Seven out of ten (72 per cent) carers were not prepared for the financial impact of their caring role.
Carers Week (2013) Prepared to care? http://www.carersweek.org/about-carers/prepared-to-care-report © Carers Trust
www.carers.org www.youngcarers.net
Carers are experts bit often feel sidelined • Carers may know the person they car far better than anyone else • They will often know best what works, what doesn’t what the person’s preferences and wishes are • However, are often not included and there are barriers to communication • Policies and pathways not always followed • Sometimes carers even seen as “in the way” • Recent reports have seen the results of this eg Francis. • Involving and listening to carers means better care for everyone.
© Carers Trust
www.carers.org www.youngcarers.net
Carers need support in every setting but often don’t get it When someone is at end of life at home, carers often struggle to get the support they need at the times they need it. Can lead to emergency admissions – not what anyone wanted “We’re always at the end of the phone” - needs to mean that! Carers often feel abandoned or out of their depth However, carers in hospital and other settings also need support, and to be involved. Carers often feel the person they care for is abruptly taken from them in their last hours.
© Carers Trust
www.carers.org www.youngcarers.net
Carers need support into bereavement • Support often disappears after bereavement • Carers dealing with intense grief as well as a huge change in role • Funding to support people at this point often lacking – some support groups exist • Many carers been caring for years – may have to undergo a huge transition - may need employment support, retraining, confidence building
© Carers Trust
www.carers.org www.youngcarers.net
New rights - the Care Bill • Carers will have right to an assessment based on the appearance of need • Carers will have the right to a support plan • Local Authorities will have a duty to meet carers’ eligible needs. • But there are worries about eligibility- for example, eligible need is when: – as a consequence of providing care, the carer’s physical or mental health is, or is at risk of, significantly deteriorating
© Carers Trust
www.carers.org www.youngcarers.net
So the question is… • • • •
Caring should be a choice. But it shouldn’t have to be a choice of caring or not Providing care means less to be provided by the state. However, caring comes with significant cost – personal and financial. So what should the “social contract” be? • If we agree to care, what can we expect in return?
© Carers Trust
www.carers.org www.youngcarers.net
What should you expect to give ? What support should you be able to can expect? • Choice – whose choice? What choice? – How much should your views count? – How much care should you expect to provide and what impact on you is acceptable?
• Information and advice – what and when? • What support for the person you care for and when? Including for people with multiple conditions.
© Carers Trust
www.carers.org www.youngcarers.net
• What support for you as a carer? – Support from where? Services? Communities? Families?
• What financial support should you expect? • After bereavement - what then? • And what can society reasonably expect of citizens?
© Carers Trust
www.carers.org www.youngcarers.net
Society is based on rights and responsibilities • People taking on incredibly difficult end of life caring roles are stretching their own wellbeing and resources to, and beyond, the limit. • Often they do so willingly. But most say simple things could have made things that bit easier. • There is the argument that they need to be well to continue to care. But what about their rights and the social contract they should be able to expect? • We know there isn’t infinite resource, but carers usually aren’t asking for much. • It’s not always from statutory services. It’s also from families, communities and others.
© Carers Trust
www.carers.org www.youngcarers.net
What should they – you – we – reasonably expect?
© Carers Trust
www.carers.org www.youngcarers.net
Duty to Care?
Supporting and involving unpaid carers of people at the end of life
Thursday 10th October London Marriott Hotel Regents Park #DutytoCare
Session 1 Plenary & Discussion Caring for Carers – culture, context and capability Key themes from panellists #DutytoCare
Key themes: Caring for Carers - culture, context and capability – Ian Gittens Chapter 1
Potential crisis point/ significant event Expecting daughter to be interpreter and carer Taking the carer’s role
2
18th birthday – young carers and transition Father’s desire for care in the home Allowing care at home
3
Father’s death and the circumstances
Thoughts & how this could be anticipated/ avoided/ addressed •Bilingual staff – to communicate with father and daughter •Care options- who else can be involved? rights and well being •Initial carer support needs assessment in the setting - carer support package as a result •Case review - ongoing assessment, monitoring and tailoring support •Regular contact - enquiring, supporting, involving
•Bereavement support •Counselling •Provide contacts details for a range of support (ensure contacts are aware of the case)
Key themes: Caring for Carers - culture, context and capability – Elaine McWilliams Chapter
Potential crisis point/ significant event
Thoughts & how this could be anticipated/ avoided/ addressed
1
Being asked to interpret and care. This is likely to compromise her educational, social, emotional and sexual development
Through considering all these developmental issues before moving to an assumption of the caring role being taken up by Asha
2
Asha becomes an adult in the eyes of the law
Look at Asha and her needs/wishes. She may no longer be a child but could be classified as a vulnerable adult and therefore need safeguarding in a similar way?
Father choosing to be cared for at home Asha not having all the information 3
The death of Asha’s father
Provide Asha with all of the information so that she can prepare for the reality of the care role she is taking on Asha is left traumatised and will need expert help (e.g. bereavement support, educational support and financial support) to get her through this.
Key themes: Caring for Carers - culture, context and capability – Tutsi Muchanyuka Chapter
Potential crisis point/ significant event
Thoughts & how this could be anticipated/ avoided/ addressed
1
•Asha has to interpret for her father •Her caring responsibilities prevent her from having a social life. She may become isolated and lose selfconfidence
•They should provide an interpreter but they should also ask Asha if she has information to share about her father. She is an expert carer. •She should have a carers assessment. She should be offered support eg young carers support group, activities/respite, free gym membership etc
2
•Asha is now legally an adult but still very vulnerable. •Her father does not want her to know he is dying, but wants to die at home •She has the right to know if she is taking on the responsibility
•Her father needs additional home care support so she is not caring on her own •She needs emotional support •The doctors must tell her what is going on otherwise they should not discharge her father back home •GP should do home visits
3
•Guilt that her father didn’t die at home
•Bereavement counselling
•Grief and bereavement
•Financial advice and support eg application for funeral grant
•Financial worries - funeral costs
•Support to get back to education/employment
•She has lost her college place
•Young adult carers support project is needed
Special Event Offer! Come and visit the NCPC stand during the break for 50% off our publications #DutytoCare
Session 2 Plenary & Discussion Carer vs. Cared for collusion, capacity, confusion Key themes from panellists #DutytoCare
Key themes: Carer vs. Cared for – collusion, capacity, confusion– Sam Guglani Chapter
Potential crisis point/ significant event
Thoughts & how this could be anticipated/ avoided/ addressed
1
Diane is a widowed independent person with chronic, potentially inexorably debilitating condition – James cares for her
Early recognition of trajectory of such conditions with signposting
2
Increasing confusion in recent months dismissed by GP and perceived by James as prompt to ‘cope’
Early recognition of strain on carers and implications of needs/ concerns being dismissed
3
Deepening needs mirrored by lack of recognition/ input from services – instruments blunt e.g. capacity – intensified loss/ ambivalence/ sadness/ frustration/ anger amongst patient/ carers/ HCPs
Good care – of patient and carers – by health services, demands attention beyond reflexive ethical/legal response – one based on identification with others’ suffering and a recognition of the wider context that doesn’t belittle/ dismiss the carers’ distress
Key themes: Carer vs. Cared for – collusion, capacity, confusion– Jonathan Herring Chapter
Potential crisis point/ significant event
Thoughts & how this could be anticipated/ avoided/ addressed
1
*Signs of breakdown in relationship between James and the medical team
*Communication; a representative; support
*Unpredictable and confused behaviour from Diane
*Power of attorney; advance decision
* Severe breakdown in relationship between James and medical team * James suffering
*James needs help to assert his rights
2
*Diane not taking medication 3
*Concerns James suffer illhealth * James may even pose risk to others.
*James to seek assessment for support; seek own support from GP and groups. *Capacity assessment * LA support * Need ensure protection for Diane and others if any risk exists
Key themes: Carer vs. Cared for – collusion, capacity, confusion– Peter Watson Chapter
Potential crisis point/ significant event
Thoughts & how this could be anticipated/ avoided/ addressed
1
Lack of Holistic approach by GP James probably did not recognise onset of dementia
GP should ask James to continue to observe & return in few months to discuss further Need for better education on Dementia for GP
2
GP fails to recognise dementia behaviour GP fails to recognise impact of dementia on carer James has shown carer commitment – why lie?
Education for whole medical team could avoid failures GP should do e.g. MMSE & refer on Team should point James to Carer Support providers GP should lead holistic approach and involve James in decisions / care plan for Diane
3
GP and medical team fail to recognise dementia patient’s ability to mask problems James beginning not to cope
Education would help significantly Medical team should recognise stress symptoms in James and refer In recognising stress in James, medical team should review causes specifically where this involves Diane
Duty to Care?
Supporting and involving unpaid carers of people at the end of life
Thursday 10th October London Marriott Hotel Regents Park #DutytoCare
Refreshing the Strategy The next five years for end of life care: What do we need to do? Tuesday 19th November 2013 Thistle Marble Arch, London For more information & to register for the event visit:
www.ncpc.org.uk/events
Duty to Care?
Supporting and involving unpaid carers of people at the end of life
Thursday 10th October London Marriott Hotel Regents Park #DutytoCare
Session 3 Plenary & Discussion Capacity to Care – conflict, confidentiality, crisis Key themes from panellists #DutytoCare
Key themes: Capacity to Care – conflict, confidentiality, crisis – Roberta Lovick Chapter Potential crisis point/ significant event
Thoughts & how this could be anticipated/ avoided/ addressed
1
When Nina realises the extent of the workload and burden that she experiences as a carer, especially when she understands the implications imposed by Mary’s decision not to involve her parents
Like Mary and Nina’s relationship the carer patient role also needs to be a partnership. By discussing the potential issues that may arise, for example lack of financial stability and the burden of stress and fatigue on Nina, together they can discuss issues that involve not just Mary, but the children, Mary’s parents and Nina too. Nina could also apply to have a carer’s assessment
2
When Nina understands the problems that arise from accepting much needed financial help from Mary’s parents whilst keeping the truth from Mary. This could cause Nina to feel guilty about her actions, which may add to her level of stress.
Faced with financial hardship it would be difficult to refuse help given the situation. Nina needs to be open and explain the stress she is under due to lack of income and not being involved in decision making when taking into account the challenging circumstances
3
When Nina sees that her own health is failing and that the whole situation is affecting the entire family.
If Nina is going to manage she must take care of herself too, both physically and mentally. In order to do this she needs to explain to Mary that she has to consider herself and together they need to consider the children’s welfare seeking help where necessary. Earlier intervention can often alleviate a crisis
Key themes: Capacity to Care – conflict, confidentiality, crisis – Kath Melia Chapter
Potential crisis point/ significant event
Thoughts & how this could be anticipated/ avoided/ addressed
1
When communication becomes impossible the plans become problematic. The rights of the grandparents are a main concern and complicate matters
Uncertainty is a feature of this case, as it is in many, but the speed of change in Mary’s condition is important here. Maybe more detailed ‘what if’ discussions need to be had in the context of the Power of Attorney and a consideration of the needs and rights of all involved.
2
Confidentiality, the rights of others and Mary’s best interests are difficult to reconcile. Nina also needs help.
A team approach to the practical, moral and legal issues maybe offers the best way through this situation.
3
Nina’s needs are gaining importance, especially as she had responsibility for the children.
A rights-based approach only takes us so far with this complex set of needs, rights and obligations. The legal position may be clear, but moral and practical problems remain.
Key themes: Capacity to Care – conflict, confidentiality, crisis – Rob George
“How on earth do we juggle complex relationships when the currency changes progressively & irreversibly?”
Summing Up – Key learning points from the sessions Richard Huxtable Chair of NCPC’s Ethics Forum and Reader in Medical Ethics and Law & Deputy Director of the Centre for Ethics in Medicine, University of Bristol #DutytoCare
Common Concerns? You go on a roundabout, seeing different professionals...
We were at the limit of what we could do
Once you’ve met one carer ... You’ve met one carer
I had no idea he was dying – I thought I’d killed him
The guilt doesn’t necessarily disappear
If we focus on the individual, we lose sight of the relationships
The system needs to be 21st century
We deserve to be told more ... Care is snatched away from you
#DutytoCare
Critical Questions How do we juggle complex relationships when the currency changes?
Whose job is it to look out for carers?
Why don’t we engage in more planning before it becomes a crisis?
Is the carer prepared for what is to come?
What is the cost of caring – not just the financial cost?
How do we have generous conversations, hearing each other?
Do I have to tell you again?
Can information technology really replace the human face and voice?
#DutytoCare
Common Crises • Who cares? – Health & social care professionals or informal & unpaid carers? • Where do we care? – Hospitals, care homes, hospices, family homes? • What do carers need? – Providing information & maintaining confidences? – Caring for the individual & caring for the family & ourselves? #DutytoCare
Caring for Carers • Contemplating caring – By the individual to be cared for – E.g. Lasting power of attorney, advance decisions – By the carer – E.g. What caring will mean (emotionally, financially, practically) – By the professionals – E.g. Appropriate diagnoses, clear communication, support services for carers #DutytoCare
Caring for Carers • Supporting caring – Translation services – Health care – Carers’ assessments – Counselling – Bereavement – Financial – Educational – Contact – Regular review – Communication #DutytoCare
Critical Concepts? We need an honest dialogue with our carers or we won’t get far
Carers may not want to deliver all the care, but will want some control
Understanding the patient cannot end at the patient
A concern addressed is a distress avoided
People need listening ears – discussion is not a one-off
Let’s get some planning in advance
The needs of the carer and the cared for needn’t be in conflict
If you don’t work together in partnership, you can’t achieve anything
#DutytoCare
Critical Concepts? • Caring Matters: Let’s talk about it – Open, honest & realistic • Caring Matters: Let’s prepare for it – Recording & discussing wishes – Ought implies can... • Caring Matters: Let’s tackle it – together – Individuals, relationships & communities – Compassion, empathy & identification • “give a monkey’s”!
#DutytoCare
Evaluation We would be very grateful if you would visit the below link and give us your feedback on the event: http://ncpc.nativeye.com/duty-to-careconference You will find a slip of paper in your pack with the same link on for ease & we will also email you with a copy of the link tomorrow after the event. #DutytoCare
Become a member of the Dying Matters Coalition Joining costs nothing! We have nearly 17,000 members so far, and are actively enlisting those that are committed to supporting changing knowledge, attitudes and behaviours around death and dying. Visit the following link for more information:
www.dyingmatters.org
Duty to Care?
Supporting and involving unpaid carers of people at the end of life Thursday 10th October London Marriott Hotel Regents Park
