Dignity Matters conference in the Eastern Region, 3rd February

The Dignity in Care Challenge event on 3 February 2010 opened with Amanda Reynolds, Deputy Director (Social Care & Partnerships, from Government Office for East of England) introducing the programme for the day.

AR introduced the participants for the conference:

Norwyn Cole, Regional Director, Care Quality Commission
Kristina Nilsson-Lindstrom, Head at Malmgarden Residential Centre, Sweden
Kent Soderberg, Manager Malmgarden Residential Centre, Sweden
Amanda Waring, filmmaker / advocate for elderly rights
Beverley Hallpike, Nurse Consultant, NWMH NHS Foundation Trust

There was a choice of one hour workshops - full details on the Agenda. The most popular subject was 'Carers - Dignity & Respect for Family Carers is not Rocket Science", and this workshop was run morning and afternoon (by Julia Hiley, Becca Winwood and Jaqui Martin).

Further information re Dignity in Care was presented, including both the national and regional perspectives. : We now have 874 dignity champions in the East of England; 25 Feb is Dignity Action Day; dignity champions across the region have all been offered the opportunity to join action learning sets.

AR's presentation was guided by slides, ie: (i) "Dignity in Care" - the way we deliver the care NOT the medical aspect. (ii) "Why Dignity in Care" - the commonest complaint from patients and their families is lack of dignity; acceptance of poor treatment can lead to tolerance of low standards and risks of abuse.

(Slides/PL presentation on website).

AR asked us all to think about - how we apply dignity in our own work place and lives.

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Norwyn Cole, CQC, has seen 100's of reports on Care and done a lot of work in the field, the recurring theme is always - poor treatment/ lack of dignity in the UK. He has been involved with the Swedish study group.

The Swedish team showed a film, "The Swedish Way" from the Malmgarden day care and residential unit and held a discussion on how they provide Care to the elderly, particularly looking at Dementia in Care.

Twenty-nine people from the East of England - (CQC/SHA-GO, Senior Nurses, & representatives from Herts/Thurrock/CB) had been on a study visit to Sweden. They have excellent programmes for the elderly and have a lot of people in the age group affected by dementia and other LTCs.

The film highlighted the importance of getting leadership and management right, making people the centre of the work. Of course there are cultural differences (and even health & safety restrictions/differences) but the overall philosophy of care should be universal.

The four cornerstones they go by are:

social measures,
the individual (behind the diagnosis),
next of kin
and staff.

The film demonstrates the benefits of integrating the family in decisions, including the patient in day to day activities, outings encourage memories & conversation, preparing food and eating together, assists care givers in problem-solving and shows dignity and respect for the whole person and who they were before illness. The information gathered about a patient provides the tools to work with.

Postscript: The DVD called "Putting People First, The Swedish Way" is available to Dignity Champions for training purposes in the East of England (contact Chrissie Bligh Chrissie.bligh@eastern.gov.uk).

The next presentation came from Amanda Waring, actress/writer/filmaker/campaigner/advocate for elderly rights. Her personal story of caring for an elderly relative and the poor standards moved her to become a passionate advocate and filmmaker on the subject of dignity in care. Her film, 'The Heart of Care' demonstrated the lack of dignity and compassion in care in the UK and showed how easily it could be given. There is another film on the subject called, "The Big Adventure" which comes with a training pack covering the effects of ageism, dignity in care and carer issues. The film/training packs are not only used in Care Homes, but prisons and hospitals too. Her plea is to eradicate loneliness, helplessness and boredom. And the message..."Look closer, I'm not just an old woman, see ME ( I have a personal story/life/history)".

Postscript: Amanda Waring's training pack is available for loan for up to a week by care homes and care providers - please email awtraining@easterndc.org.uk.

Some interesting facts to come out of discussions:

Essex is the county with the most elderly in the country
In the next 20 years, the over 65 yr old population will increase by 55%
In the next 20 years, the number of 85 yr olds will increase by 100%
And we are living 11 years longer than in 1940.

The conference took an hours break for lunch and networking, before proceeding to the next choice of workshop. The two workshops that notes were taken in were:

Workshop Session 1b - "Carers - Dignity & Respect for Family Carers is not Rocket Science" by Julia Hiley and Becca Winwood, Carers Experience Leads and Jaqui Martin, Chair Regional Carers Leadership Board.

This was the most subscribed to workshop, morning and afternoon. The list filled up so quickly for both these sessions, people had to sign up for second choices.

The workshops had a good mix of attendees - health workers, voluntary community workers, family carers, private sector care homes.

Some of the challenges/queries facing these groups were noted (flipchart JH)

Terminology should be addressed - what is a family carer vs carer
6000 people taking up caring roles each year
Inadequate support facilities
So many diverse groups these days (ethnic, MH, elderly, LTC etc); not all services fit each case
History of families equals understanding
Government asking more families to do more caring at home - better environment & support at home; this requires more training - Government aware
Lack of knowledge within family carer
Developing regional guidance/support

The group did a role playing exercise - "What is your Experience?". Each table given a different scenario putting themselves in the shoes of a carer in a challenging caring role. We hoped to raise awareness of the many aspects that need to be considered on a case by case basis.

Workshop 2a - "Achieving Dignity within End of Life Care" with Penny Lavis, Programme Manager, NHS EoE, presenting. There are many end of life situations not just with the elderly in care and her experience within midwifery highlighted this. PL's presentation was guided by slides (on website).

Some statistics presented were:

55,000 deaths in EoE a year w/ 77,000 births
Places of death: 54% of people die in hospitals / 16 - 26% at home / 4% die in hospices.

PL asked us to think about the psychological aftermath of a 'bad death' - families should be able to look back with fondness, not how bad it was - these things can affect family members and their work for many months.

The subjects PL covered and delegate comments were:

What Are We Trying to Achieve:

Where to die, choice, PCTs trying to have people die where they want to

Standards:

CQC & SHA trying to build into End of Life care
Personal health plan - preferences, how
Bereavement Services
Survey on how to manage what people need ie: counselling

Advance Care Planning

Proposal: national common assessment

How Services Provided

Essential services should be 24 hrs/7 days a wk
Coordinated care & support
Services should be in place

Electronic Services

IE: overdose preventable by a core/key work stream having electronic information re allergies etc.

Working w/ National Coalition

National Council for Palliative Care / PCT LA together

Commissioners & Cancer Care Groups

Marie Curie assisting with choices programmes
Creating managed palliative care/end of life networks incorporating coordination / cooperation / choice

PL asked the conference....

WHAT ARE SOME OF THE KEY FACTORS

(i) that arise with End of Life issues

(ii) contribute to achieving dignity at end of life

Suggestions were:

(i) Raising awareness - talking about the physical realities of death / signposting symptons / what to expect/wiping out the taboo of talking about death.

(ii) Choices, more training, family involvement / support ie talk about arrangements/ awareness, openness,

Respecting wishes (but whose? patient or family), emotional support. Hospice training for at home care.

South West Essex are running an event for members of the public asking about end of life issues.

Some thought if one dies out of hospital, police always called; others thought only if a sudden death.

Organ donorship was mentioned. PL advised the SHA has a campaign through the Public Health Directorate re organ donors.

WHAT IS IT THAT WE NEED TO DO TO GET CHANGE?

Mandatory training, communication, case studies (DVD), central contact for advice

(Luton have their own training groups, not NHS)

WHAT INFO DO YOU WANT FROM PROGRAMME BOARD TO HELP IMPROVE DIGNITY AT END OF LIFE?

Dignity Champions - but what do they do

GP/Patient relationships - non existent nowadays

Care Homes - huge challenge, have a huge turnover of staff

Joined-up working groups

Risk aversion

People who work with people

Delegates reconvened for a presentation from Chris Birbeck (NHS EoE) called:

From Here to Dignity... Exploring and Advancing Dignity in the EoE Health & Social Care System

CB then asked what are 'Practical Next Steps' and 'What Would Good Look Like to You' and 'What Could You do Differently Tomorrow to Move Forward to GOOD'?

Partnership working/seamless working: too many people falling through too many holes
Strategic support: role of dignity champions, change culture & attitudes
Inclusivity of: elderly, dementia, role of staff/carers, change culture and thought processes

How Dignity in Care Supports Safeguarding & Quality in Adult Care by Penny Furness-Smith

The day finished with Penny Furness-Smith speaking on How Dignity in Care Supports Safeguarding & Quality in Adult Care, with a final summing up from Margaret Berry, the new Chair of the SHA's Patient and Carer Programme Board.

FLIPCHART NOTES FROM WORKSHOP B:

CARERS - DIGNITY & RESPECT FOR FAMILY CARERS IS NOT ROCKET SCIENCE

Presented by: JULIA HILEY - EoE EDC CARERS EXPERIENCE LEAD

BECCA WINWOOD - DoH CARERS EXPERIENCE LEAD

JAQUI MARTIN - CHAIR SUFFOLK FAMILY CARERS

The Groups were asked:

WHAT CAN WE DO?

Self directed support - how's it going

Encouraging carers to give feedback easily

Offer help to carers with assertiveness/confidence

Information about what carers care entitled to ....... Plus

Choice.... what is out there / how can I complain

Joined up delivery / knowledge

Don't assume all carers want statutory services

Ensure services are offered in different ways; ie: through social activities / voluntary orgs

Carer involvement in: assessments face to face / ask cared for if they are happy / for nominate

person to be their carer

Make clear confidentiality policies - sharing info

You As A Family Carer

Allocated support - same as patient or not?

How we are "badged"

Ask ME how I am

Sensitive admission/discharge policies

What are my rights/entitlements

Your Friend/Relative "Cared For"

Allocated support

Sensitive admission/discharge

Ask ME what I need

CHAMPIONING CARERS' DIGNITY TOO

CANCER - people affected by cancer:

Private industry

Care Homes

- educate

- legislate

- inspect

CQC inspections about to change

LINKS can enter private organisations

YOU CAN CARE, BUT NOT BE A CARER!

HOW ARE FAMILY CARERS TREATED NOW?

ASSUMPTIONS

Carer will simply do it

Partner may have relationship problems

Level of care / who cares / mixed messages / roles within family - don't assume

Daughter is willing to take responsibility

Carer is ok to care, doesn't have personal circs / needs / history

Carers are female

Carer doesn't have opinions about 'cared fors' treatment

Professional Carers know best

FEELINGS

Mum - kept informed, ensure son knows you care

Son's wishes are paramount

Guilt

Expectations

Anger

Could compound already difficult relationships

Tensions

Carers not listened to

Scared

Isolated

Dedicated

NEEDS

I'm a mum as well as being a Carer

Communicate with whole family & multi agency working

Assessed - holistically

Treat me as an "expert partner"

Opportunity to speak for my loved one, when they can't do this themself

Lack of info

Where are the Carers - we need to identify them

A right to a life

PERSON CENTRED SERVICES

THE DIGNITY IN CARE CHALLENGE

3^RD FEBRUARY 2010

DIGNITY / DEMENTIA

Workshop notes: What do you see? Look closer ... see ME - Dignity in Dementia

What do we do well!?!

Good

Training at the core - follow up
Being here today, sharing & going back to change things
Excellent staff
Life story work & family engagement
Dignity work!
Outcome based commissioning - more flexible
Befriending to maintain/restore dignity
NDS
Individual focussed
MH liaison nurses
Tiptree boxes
Encouraging innovation
Reduce stigma
Engaging with users & carers
Dementia specific network to share good practice locally/regionally
Staff goodwill, eg. during snow

What do we do poorly?! Same challenge

Not doing well

Not funded properly, therefore carers not well paid
People with more challenging behaviour
Better at training??
Need to evaluate impact of training
Need to train managers - leadership
Not enough time to work in a person centred way for domiciliary care -15 mins call - task orientation not involving person. Feature of how care is commissioned - dignity not embedded

What should we be doing more of (good practice)?

How can we get better?

People with learning disabilities - health action plan (Norfolk yellow book) - extend to people with dementia
Alzheimers life story book (forthcoming)
Accompany with change in practice
Care homes have form to send in with patients to acute hospitals/domestic care agencies do this but hospitals tend to ignore. Could do this in a co-ordinated fashion - Local Authorities, PCTs, hospitals & care providers
GP & PCT involvement in medicine management (pharmacy adviser in PCT)
GP engagement??
Addressing medication in hospital
Drug rounds = time misspent (impact on residents & staff) if medication has not been reviewed
Raising EOL issues

When and how are we going to start?

How can we de-medicalise dementia but also get specialist MH input when needed (which is more cost effective & gives better outcomes)
Feed into local work on pathways
Continuing health care & dementia (regional work)
Need good practice examples to shape services across the region

My Ideas (flipchart notes from workshops)

When arranging day care/surgery/OPD is it possible to Choose & Book to plan male only and female only sessions?
In the Swedish model staff wore ordinary clothes, not uniforms. We should consider abandoning our uniforms.
In partnership we need to work out and provide what someone needs to live in their own home, this includes appropriate equipment/building adaptations in place ASAP as well the right support from paid carers
Make care homes more aware of information and campaigns. Although it is available online mailshots may be useful.
More champions needed in care homes
CQC please enforce supervisions in care homes and ensure they are effective and ongoing
Support managers and staff to support basic ADC, eg cooking and not be confined by H&S
Individuals, groups, organisations need to lobby their elected representatives to improve the status, pay and funding of social care and its staff
Clean toileting facilities important rather than just single sex toilets
How did mixed sex accommodation become acceptable?
Lowest common denominator - good enough is good enough
Staff beaten down
People need to be asked direct questions
Don't want to complain - may have to use the system again
Emergency - wait to be treated
Lack of dignity in single sex bays as well
Promote the use of people living with dementia rather than 'suffering' (also promote this in the media
Can we find ways of using the Alzheimer's Society Counting the Cost Report (2010) in East Anglia? How can we do this?
Stop talking about older people as a 'ticking time bomb' - pejorative, lack dignity, makes older people sound like a problem
Do not segregate the elderly in hospital, abolish geriatric wards - people are admitted because they are ill not because they are old
Amanda Waring captured my imagination, could she do a TV series on the subject? Can we not get more publicity, eg a newspaper to do a weekly column?
Cleaning bathrooms more than twice daily - in hotels facilities cleaned hourly
How will EoE/region support changes to traditional commissioning to support proposed good practice in extra care as per the Swedish model?
How can PCTs include carer issues within contracts?
Don't let family carers fall between the gaps
Don't make assumptions
Current respite beds are used - service providers are aware of respite beds and use them. This may prove that more beds are needed.

For copes of the presentations, please go to the SHA site http://events.eoe.nhs.uk/1782

Please see below for a copy of the agenda for the day and photographs from the day.

Downloads:

Eastern March 2010 agenda (doc - 274Kb) (opens new window)

Dignity Matters conference in the Eastern Region, 3rd February

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