Bereavement Care in Cumbria and LancashireBereavement Care in Cumbria and LancashirePalliative Link Nurse Study DayPalliative Link Nurse Study Day‘‘Crooklands Hotel’, Kendal, LA7 7NWCrooklands Hotel’, Kendal, LA7 7NW

Wendy Lewis-CordwellWendy Lewis-CordwellMacmillan Network Bereavement LeadMacmillan Network Bereavement Lead1515thth November 2012 November 2012

What is the project?What is the project?

To encourage the development of and equitable and high quality bereavement service across the whole of Lancashire & South Cumbria Network area building on existing good practice and national guidance

Advancing disease

1 year 6 months

DEATH 1 year

Increasing decline

Last days

First days

Bereavement

Grief / Bereavement can begin at the diagnosis of any life-limiting disease

NW End of Life Care ModelNW End of Life Care Model

Develop Bereavement Services in Develop Bereavement Services in Cumbria and LancashireCumbria and Lancashire

Map current level of services Undertake a gap analysis of such provision Identify improvements in services and environments Introduce agreed minimum standards Encourage collaborative working Respond & Implement National Guidance Develop Education/Training Identify and share Best Practice Be accessible to patients, families, carers, visitors,

staff as the project demands

BEREAVEMENT CARE BEREAVEMENT CARE DEVELOPMENTDEVELOPMENTCUMBRIA & CUMBRIA & LANCASHIRELANCASHIRE

Carlisle

Brampton

PenrithWorkington

Whitehaven

Barrow-In-Furness

Ulverston

Ambleside

Windermere

Kendal Sedbergh

Brough

Anton

Kirkby Lonsdale

Carnforth

LancasterMorecambeHeysham

Fleetwood

Blackpool

Ormskirk

Preston

Leyland

Chorley

Darwen

Blackburn

Burnley

Bacup

Clitheroe

Earby

Accrington

Nelson

Keswick

Garstang

Kirkham

Ravenglass

Wigton

20.054 deaths per annum – Cumbria & Lancs (Source: Office for National Statistics and Research Agency – 2010)

Suicide facts …Suicide facts …Above National Average in CumbriaAbove National Average in Cumbria ( (data published by Demos 2011)data published by Demos 2011)

2009 England – 4,390 16.1 Suicides for every 100,000 males 4.08 Suicides for every 100,000 females One death by suicide every 2 hours

Data Supplied by PCT’s & Coroner’s Central Lancashire 32.5 per annum Cumbria 52 per annum North Lancashire 38.7 annum

Cancer patients………Cancer patients………the risk of suicide increases by more the risk of suicide increases by more than TEN times in the week after than TEN times in the week after diagnosis.diagnosis.

Scope the area…….Scope the area…….The Bereavement Services DirectoryThe Bereavement Services Directory

Scope the area…….Scope the area…….5 Localities5 Localities

Scope the area…….Scope the area…….The Bereavement Services DirectoryThe Bereavement Services Directory

Network Specification for Bereavement Network Specification for Bereavement Services in HospitalsServices in Hospitals

Standards of bereavement care that should be in place, to support the development of an equitable, high quality coordinated service across all hospitals

Gap Analysis sent to all five acute trusts for completion

Key recommendations: Senior Managerial support Bereavement Office Ward Chaplaincy Service Mortuary Service Information Policy and Procedure Monitor and Measure the Service

When a person dies - October 2011Guidance for professionals on developing bereavement services

There is some value in locating bereavement centres within a mortuary

Salisbury NHS Foundation Trust Providing - One stop Hospital mortuary and

bereavement services can also be available for advice to professionals

Provide a quiet, dignified and respectful environment

Information and advice given, improving the quality of the experience

Reducing the overall amount of time taken in completing and issuing the relevant certificates

Principles of good practicePrinciples of good practice

Privacy & DignityPrivacy & Dignity Time to mortuaryTime to mortuary CommunicationCommunication Work in Partnership - with families Work in Partnership - with families

and with others e.g. coroners, and with others e.g. coroners, religious representatives & religious representatives & voluntary organisationsvoluntary organisations

Environment and FacilitiesEnvironment and Facilities Staff Training and DevelopmentStaff Training and Development Staff Support and supervisionStaff Support and supervision Review and AuditReview and Audit

Who is involved when a person dies?Who is involved when a person dies?

‘‘For you in Your Loss’ For you in Your Loss’ Questionnaire ResponsesQuestionnaire Responses

Staff on the ward have many challenges but they handle all with patience, skill and compassion

The booklet helped me to focus. Guiding me in how to do the practicalities

I was allowed to stay longer than other visitors. The ward staff were wonderful, I will never forget their kindness

Maybe a simpler way of getting into the hospital at night

Forget ‘confidentiality’ obsession and tell one’s loved one how ill their relative is

Unexpected delay in being able to register the death, doctor not available to sign medical certificate cause of death – on night duty!

Network Specification for Bereavement Network Specification for Bereavement Services in HospitalsServices in Hospitals

Standards of bereavement care that should be in place, to support the development of an equitable, high quality coordinated service across all hospitals

Gap Analysis sent to all five acute trusts for completion

Key recommendations: Senior Managerial support Bereavement Office Ward Chaplaincy Service Mortuary Service Information Policy and Procedure Monitor and Measure the Service

Network Specification for Bereavement Network Specification for Bereavement Services in Care HomesServices in Care Homes

Every care home should embrace the principles of dignity and respect, when providing a bereavement service and include the following:

Gap Analysis sent to all care homes for completion

5 Key recommendations: Policy and Procedures Care After Death Information and Support Quality of care after death, audit

and review Training and Education

Small Changes ….Small Changes ….Make a big difference......Make a big difference......

‘‘In Your Loss’ In Your Loss’ FolderFolder

Bereavement Folder to be given to all families / carers with the MCCD in Cumbria and Lancashire

50,0000 to be distributed to Hospitals, Hospices, GP’s, Care Homes, Registrars, etc

Initial supply delivered Nov 2012

Feedback from organisations Dec 2012

Further supply February 2013 (Each organisation will receive two years supply)

Organisations can insert their contact details plus any additional local information

‘‘When Someone has Died’ When Someone has Died’ 1000.0000 printedDistributed across Cumbria & LancashireNov/Jan2013

‘‘In Your Loss’ In Your Loss’ Folder - Distribution Folder - Distribution

Dignity, Respect, Sensitivity, Dignity, Respect, Sensitivity, Communication!Communication!

Are we still leaving bereaved families without information about what to do next!!!

Cumbria and Lancashire Cumbria and Lancashire Bereavement ForumBereavement Forum

Inaugural meeting 10Inaugural meeting 10thth August at Preston August at Preston Business CentreBusiness Centre

Role of the group:Role of the group: Promote Consistency across all localitiesPromote Consistency across all localities Identify opportunities of integrated workingIdentify opportunities of integrated working Learn from others and share best practiceLearn from others and share best practice Influence local and national development of Influence local and national development of

bereavement across ALL sectorsbereavement across ALL sectors Meet 4 times per year Meet 4 times per year (meetings to be rotated (meetings to be rotated

across Cumbria and Lancashire)across Cumbria and Lancashire)

Next meeting Friday 23Next meeting Friday 23rdrd November 2012November 2012at Eden Valley Hospice, Carlisleat Eden Valley Hospice, Carlisle

National National Issues………..Issues………..

Liverpool Care Pathway: Liverpool Care Pathway: Norman Lamb Norman Lamb Health Minister will listen to concerns – Health Minister will listen to concerns – BBC News 01.11.2012BBC News 01.11.2012

• IT IS "COMPLETELY WRONG" FOR TERMINALLY ILL IT IS "COMPLETELY WRONG" FOR TERMINALLY ILL PATIENTS TO BE PUT ON A "PATHWAY" TO DEATH WITHOUT PATIENTS TO BE PUT ON A "PATHWAY" TO DEATH WITHOUT RELATIVES BEING CONSULTEDRELATIVES BEING CONSULTED

• Mr Lamb also defended the practice of paying hospitals for using the pathway

• I want to hear where things have gone wrong. I want to ensure we address that absolutely, but a lot of good things have happened in recent years to improve the experience at the end of life.“

• ‘Where there have been problems, I would say that it has not been with the LCP but due to lack of communication

• Conservative Peer Baroness Knight, is calling for an inquiry into suggestions the LCP has accelerated some people’s death, said she had heard of cases where people were deprived of water without consent

Views sought on strengthening Views sought on strengthening NHS Constitution………………NHS Constitution………………

Proposals to strengthen the NHS Constitution are set out for public Proposals to strengthen the NHS Constitution are set out for public consultation today, with the NHS, patients and public are all being consultation today, with the NHS, patients and public are all being asked to respondasked to respond Patients, their families and carers should be fully involved in all

discussions and decisions about their care and treatment, including their end of life care

The closing date for comments is 28 January 2013 Responses to the consultation will feed into a revised version

of the NHS Constitution, which will be published by April 2013 http://www.endoflifecareforadults.nhs.uk/news/all/views-sought

-on-strengthening-nhs-constitution

New NHS Mandate – 13.11.2012 New NHS Mandate – 13.11.2012 identifies EoLC as a priority area……...identifies EoLC as a priority area……...

The first Mandate between the Government and the NHS Commissioning Board, setting out the ambitions for the health service for the next two years, has been published today

The NHS will be measured, for the first time, by how well The NHS will be measured, for the first time, by how well it achieves the things that really matter to peopleit achieves the things that really matter to people.

1.1. Preventing people from dying prematurelyPreventing people from dying prematurely

2. Enhancing the quality of life for people with long-term conditions

3. Helping people to recover from episodes of ill health or following injury

4. Ensuring that people have a positive experience of care

5. Treating and caring for people in a safe environment and protecting them from avoidable harm

http://www.dh.gov.uk/health/2012/11/nhs-mandate/

Death Certification Death Certification Reform ….Reform ….

People, Process & Technology in the Current SystemPeople, Process & Technology in the Current System

Death Certification Reforms - Death Certification Reforms - IssuesIssues• April 2014 - new date for implementation of April 2014 - new date for implementation of

service instead of October 2013service instead of October 2013• Transfer old payments to the new system Transfer old payments to the new system

and simply add burials and simply add burials • Will the public perceive this as imposing a Will the public perceive this as imposing a

‘death tax’‘death tax’• How will the LA’s cope with ‘non payment’How will the LA’s cope with ‘non payment’

- will bailiffs be used?- will bailiffs be used?• Pilots in hospitals, community, urban and Pilots in hospitals, community, urban and

rural area have been successfulrural area have been successful• Extend pilots on 2 sites - to include the Extend pilots on 2 sites - to include the

sensitivities of neonatal and child deathssensitivities of neonatal and child deaths

Will the new reforms Will the new reforms improve death statistics?improve death statistics?

National Working Alliance For National Working Alliance For BereavementBereavement The Alliance brings together

professional and volunteer organisations operating across all sections of the bereavement service workforce including:

NHS Bereavement officers Medical Examiner officers Mortuary and pathology staff Hospital chaplains Coroner officers Hospice bereavement

coordinators Bereavement researchers Bereavement volunteers Experts in the field

The Alliance had been proposed to provide an overarching body for the relevant professional and volunteer organisations working with bereaved people in order to provide a shared view.

The Alliance will provide a collective voice to the Government, other professionals and to members of the public.

Gold Standard Bereavement Care Gold Standard Bereavement Care Training for ProfessionalsTraining for Professionals

Gold Standard Bereavement Care Training Health and Social Care Professionals who come

into contact with the bereaved Roll out as a national programme Build on the previously delivered

BSA ‘When a patient dies’ training Cruse Bereavement Awareness and Support

Training Good practice benchmark Initial pilot plus 5 additional pilots Completed by March 2013

The Bereavement The Bereavement PathwayPathwayWebsite?Website?

Care of the Dying is ‘Care of the Dying is ‘URGENT CARE’URGENT CARE’

Dignity, Respect, SensitivityDignity, Respect, Sensitivity

• Treat the deceased with the dignity Treat the deceased with the dignity and respect – as you would have and respect – as you would have done when alive particularly when done when alive particularly when moving / handing themmoving / handing them

• Is there any specific information Is there any specific information needed from the families / carers / needed from the families / carers / others close to the patient i.e. others close to the patient i.e. religious practices?religious practices?

• Be aware of your own attitude, Be aware of your own attitude, behaviour, and the words you usebehaviour, and the words you use

• Be aware that issues and incidents Be aware that issues and incidents around death and dying impact the around death and dying impact the grieving processgrieving process

REMEMBER:REMEMBER:

When someone dies you only get ONE ONE change to get it right.

Get it wrong and the family will remember what has gone wrong forever.

Any QuestionsAny Questions

Thank youThank you…………

Further informationFurther information

Please contact :

Wendy Lewis-Cordwell

Macmillan Network Bereavement

Co-ordinator

T: 01772 647 037/041

M: 07766137210

email:

wendy.lewis-cordwell@lsccn.nhs.uk