End of Life Care

November 2012 Issue 14

Everyone’s business in

Gloucestershire

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To improve the quality of care at the end of life for all patients and enable more patients to live and die in the place of their choice.

Welcome to the fourteenth issue of Gloucestershire’s newsletter End of Life Care.

The purpose of this newsletter is to raise the profile of end of life care by informing you about local and national end of life care issues and developments, promoting the message that end of life care is everyone’s business.

Through the sharing of best practice, together we can achieve high quality care for patients and their carers.

In this issue:

zz National and Regional Updates

zz Delivery of high quality care in all care settings

zz Care Planning: NHS Gloucestershire takes the road

zz Responding to the media coverage of the Liverpool Care Pathway.

The End of Life Care Local Authority Profiles 2012 present over 50 indicators, including indicators that can be used to predict need:

zz population

zz deaths

and to look at current patterns of care:

zz place of death

zz cause of death

zz deaths in hospital

zz care homes

zz social care.

Using social care indicators for populations aged 65+, the profiles are available in InstantAtlas format and also as individual PDFs for each local authority.

New end of life care profiles for each local authority

Review of national arrangements for providing information and advice to carersThe Department of Health has published a review of the service arrangements for providing information and advice to carers.

Access to good information and advice is important in supporting carers to get the best from their own lives and assist them in getting the right help to maintain them in their caring role.

Carers Direct provides an on line information point for carers, as part of NHS Choices, and a telephone advice line through which they can gain access to individual advice.

The Review of Carers Direct information and advice looks at the arrangements for delivery of the service with a view to informing the fit within wider Departmental developments as well as changes in health and social care specifically.

National & Regional Updates

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New web tool is helping to track user involvementInvolving users in care decisions is a vital element of end of life care. But how do you set about doing it? And how do you know it is leading to improvements? A new web tool aims to provide many of the answers

An increasing number of organisations are involving users in their end of life care planning and decision-making. But so far there has been rather less work on measuring the impact they are having.

A new web tool, developed by the NEoLCP, NCPC and the Institute of Healthcare Management and launched last month, aims to aid this process by ena bling any organisation to record, reflect and report on the way they involve people.

Called Involve Me, the free, easy-to-use tool offers a structured approach to planning an involvement activity and deciding what information will be collected as well as how the outcome will be evaluated and its impact measured.

The expectation is that this process will actually strengthen the case for user involvement. “Ultimately,” notes the website, “it has the potential to increase organisational support and investment by showing that it makes a difference.”

It also encourages people to outline the strengths of a particular project as well as areas for improvement. And it encourages clear feedback of results to all those who have been involved in the process.

The tool is designed for all types of organisations who work to improve end of life care, from care homes and hospices to GP practices and commissioners, and can accommodate everything from small individual involve ment initiatives through to large scale group activities. All information is held securely and is only accessible to the person or organisation that provided it, unless they wish to share it with other care providers. More information

To start using Involve me, register free at www.involveme.org.uk. For more information about the website and evaluating the impact of involvement, please contact Jo Black at j.black@ncpc.org.uk

National & Regional Updates

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Raising Awarenessen

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A new leaflet to support conversations about Dementia “Time to talk”

Dying Matters has launched its eleventh leaflet, ‘Time to talk?’, which covers end of life care discussions and planning for people with dementia.

It’s rarely easy to begin conversations about end of life care, but speaking openly about the future can improve quality of life throughout the progress of the illness. These conversations must be started early, however, or vital cues for care provision can be missed.

The new leaflet offers a wealth of advice covering topics such as what to talk about, when to talk and what might happen if you don’t talk.

‘Time to talk?’ is free to download from our leaflets page. If you would like additional copies, email info@dyingmatters.org or call us on 08000 21 44 66 for prices and ordering information.

Diabetes and End of Life CareDiabetes UK has produced a new strategy for diabetes and end of life care. End of life Diabetes care aims to outline a consistent but high quality approach towards end of life care for people with Diabetes by providing a series of clinical recommendations.

The guidance also includes downloadable

supplementary information including algorithms. Information sheets relating to staff competencies and a short guide for healthcare professionals relating to sick day rules are included in the clinical care recommendations.

For more information http://www.diabetes.nhs.uk/news_and_events/new_end_of_life_diabetes_care_strategy/

Prontaprint working together in improving patient careProntaprint Cheltenham and Gloucester have been working in partnership with the NHS in Gloucestershire for over 12 years supplying printed materials throughout the county and beyond. In addition, many of the county’s nursing homes are now calling on our knowledge and expertise to supply them with specialist printed documentation to tie in with the materials we provide on a daily basis to the NHS Trust.

We have recently been working with the GCPA and I was delighted to be invited to exhibit at their recent seminar held

at Gloucester Rugby Club. In response to the interest generated by our display stand of printed forms relating to the End of Life, Liverpool Care Pathway, DNAR Labels, Risk of Falling and various core care plans, I have created a pack of sample forms, tailored solely to the needs of Gloucestershire Nursing Homes. Alongside this specialist material we are able to print any bespoke items such as letterheads, appointment cards and brochures including any marketing materials that your organisation may need.

As a commercial printer working at the heart of the county, Prontaprint has been established for over 35 years, providing the whole range of print associated services including graphic design, full colour/digital print, large format displays and direct mail. If you would like a sample pack then please contact me Tessa Falzon by email at tessa@gloucester.prontaprint.com or by telephone 01452 874999. I look forward to hearing from you.

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Delivery of high quality care in all care settings

end

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care Kidney disease and End of Life Care

‘10 Top Tips’ is a guide produced by NHS Kidney Care to help GPs and primary care professionals provide high quality end of life care to patients with advanced kidney disease.

Written by Dr Lucy Thompson, a GP from Trowbridge Wiltshire, and a member of the Macmillan GP Adviser Team, the 10 Top Tips are designed to raise awareness about the needs of kidney patients who are nearing the end of their lives. They also signpost GPs to more information where needed.

Dr Thompson explains: “It is hoped these tips will give GPs more confidence about providing good end of life care at home to kidney patients. For many GPs the thought of trying to manage a patient with advanced kidney disease at the end of their life can be quite challenging.”

The tips cover a range of topics, from how to identify patients who may be nearing the end of their lives and working with the multidisciplinary team to check what plans are already in place, to guidance on symptoms and medication for patients with advanced kidney disease.

http://www.endoflifecareforadults.nhs.uk/publications/caring-for-patients-with-advanced-kidney-disease-at-the-end-of-life-ten-top-tips

http://www.endoflifecareforadults.nhs.uk/publications/eolcadvancedkidneydisease

Good end-of-life care practice in Gloucestershire for Motor Neurone DiseaseThe term ‘Motor Neurone Disease’ refers to a number of different progressive neurodegenerative disorders. Damage to motor neurones leads to increasing muscle weakness, and the subsequent wastage of muscles causes difficulties in walking, talking, swallowing and even breathing unaided.

Although there are a number of different presentations of MND, each with differing prognoses, the vast majority of people affected will die between two and five years from the onset of symptoms and, due partly to difficulty in making an accurate diagnosis, 50% of people with MND will die within fifteen months of diagnosis.

MND is relatively rare, with a prevalence of 7 per 100,000 and an incidence of 2 per 100,000. Recent advances in genetics lead us to believe that the genetic implications may play a much greater part than was previously thought. However, whilst a small percentage of cases occur where there is a known family history of the disease, the vast majority appear to occur sporadically.

At present, there are 38 adults within Gloucestershire who have been given a diagnosis of MND, but it is estimated that, on average, a GP will only have one person with MND on their practice register during the whole of their professional career, so it can be difficult for professionals to develop significant expertise in the care of this group of patients.

The rarity of the condition, the speed at which it can progress and the likely impact on the individual and wider family means that means that MND poses significant challenges for health professionals. Careful planning, good communication between services and co-ordination of care is vital.

Place of death for people with MND

In a study of death certificates where MND was mentioned as the underlying cause

of death (Deaths from neurodegenerative diseases in England 2002 – 2008, National end of life care intelligence network, June 2010) 11% died in their own homes and 15% died in a care home. This figure compares with the 18% and 15% respectively of people dying at home from all conditions (End-of-Life strategy, Department of Health, July 2008).

In Gloucestershire, an audit of place-of-death for people with MND has been carried out over the past five years. The chart below shows the percentage of people with MND dying in different care settings between January 2008 and September 2012 as a percentage of total deaths from MND in the county.

Although the numbers of death each year are small (range 11 – 19 per year) and therefore the percentages may not be statistically significant, there has been a marked increase in the percentage of people dying at home or in a care home, compared to those dying in hospital in the same period.

Sowing the seeds for good end-of-life care from diagnosis

The review of neurological services that was conducted in Gloucestershire in 2009/10 highlighted that many people with MND felt that there was a lack of co-ordination in services in the county.

The appointment of a full-time Clinical Lead for MND in Gloucestershire in 2010 has helped to improve the situation markedly.

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Delivery of high quality care in all care settings

The Clinical Lead makes contact with people newly-diagnosed with MND and ensures that the appropriate referrals are made to members of the multi-disciplinary team, which include occupational therapists, physiotherapists, speech and language therapists, dietitians, neurologists, GPs, community nurses, specialist palliative care services, the respiratory team, neuropsychologist, care managers and careworkers.

There are MND multi-disciplinary team meetings every two months in Gloucester and in Stroud to promote good communication and co-ordination between the relevant therapists, the Clinical Lead, social care services, the specialist palliative care team and the MND Association. In this way, it is hoped to ensure that people with MND and their families receive the right care, equipment, information and support from the outset so they feel able to make informed choices about their future care.

The role of the Primary Health Care Team

As the disease progresses, the role of the primary health care team becomes more significant. A checklist is a useful prompt to assist PHCT members to identify whether they are using best practice in relation to their patients with MND (for more details go to further information)

The role of the MND Association

The MND Association is very active within Gloucestershire. The national team and the local Regional Care Development Adviser can provide support, information and advice for health and social care professionals and people affected by this disease.

The Association’s website – www.mndassociation.org – gives access to a number of resources that can be downloaded, including a section for professionals and specific resources or GPs.

Just-in-case boxes can also be provided at the request of a GP, with recommendations about which drugs may be needed. The drugs prescribed by the GP should include those that may be given by a carer in emergency situations (eg. buccal midazolam or sub-lingual lorazepam), as well as appropriate medication for the GP/out-of-hours services (eg. diamorphine, midazolam, glycopyrronium bromide).

Support for people with MND and their families is given through a monthly support group meeting held in Gloucester and through one-to-one support through Association Visitors.

Conclusion

There is some good practice in place with Gloucestershire for people with MND.

More people are able to die at home than previously, and the co-ordination of care has improved markedly over the past two years. There are many avenues for health professionals within the county to freely access support, information and advice to ensure that this group of patients received the best possible care in light of this extremely challenging condition.

Hilary Fairfield, Regional Care Development Adviser, MND Association

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Delivery of high quality care in all care settings

For further information, contact:

MND Association www.mndassociation.org or MND Connect 08457 626262

Hilary Fairfield, Regional Care Development Adviser (West of England) 0845 375 1828 or hilary.fairfield@mndassociation.org

Anita Sinclair, MND Clinical Lead anita.sinclair@glos.nhs.uk

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Delivery of high quality care in all care settings

End of Life care Link Worker study dayAnother successful study day was held on the 12th September at Plock Court for End of life Care link workers in the community and community hospitals, Mental Health Trust care homes and Learning Disabilities.

zz Key Points Covered on the study day were:

zz Being updated on the national and county EoLC strategy and pathway

zz Learning about how manage change more effectively

zz Sharing success stories and Challenges

zz Using e ELCA and the End of Life Care e-learning materials – using the online resource.

zz Cascading information to others.

Talking about and planning for death and dying is never easy, whether you, or the people you care for, are facing a life-limiting illness or simply thinking about the future.

NHS Gloucestershire wants to reduce the reticence of talking about death and dying. End of Life Care professionals from NHS Gloucestershire will be taking a road show around the county, visiting a total of 41 care homes to support care home staff across the county to enable their residents to have the opportunity to express their wishes about death and dying clearly.

Statistics show that 81% of people have not written down any preferences around their own death and that fewer than a third have discussed their dying wishes with their family and friends.

This road show has been developed following four workshops held to encourage care home staff to think about, and develop their understanding of, end of life issues. Care homes will also be given resource packs to help them to deal with difficult issues sensitively and helpfully. These packs include useful information on Advanced Care Planning, the Gold Standards Framework, The Mental Capacity

Act, e-learning opportunities and a copy of the Dying Matters newsletter.

A member of staff from a care home in Gloucestershire who attended one of the workshops said:

“The workshop was fantastic, making a very difficult subject matter “human” and accessible. It was run with considerable sensitivity, yet it was interactive and

informative.

I really did think it was exceptional: the trainers clearly know their subject matter inside out.

The resource pack will be hugely beneficial to our care home, and the sunflower seed we were given to plant as a reminder of our commitment

to put what we learned into practice was really innovative – a daily reminder.”

Jo Goode, Chair of The Gloucestershire Care Providers Association (GCPA), said:

“‘The GCPA has a strong relationship with the End of Life Care team and are always happy to support their initiatives. We feel the work they do to bring the importance of good End of Life Care to the forefront of the Gloucestershire Care Sector is excellent.”

NHS Gloucestershire takes to the road to help care homes deal with end of life issues

Care Planning

Since the last newsletter Gina and I held a 3 day Advance Care Planning (ACP) road show, following on from the four workshops held earlier in the spring. We targeted those homes who had been unable to attend the workshops and those with whom we had had not contact with in the past.

The road show was again funded by the National End of Life Care Programme and we split the county in three visiting 42 homes in total. It was informative, interesting and the response we had was very varied! The reception we received was positive but it was disappointing to find out that not all homes cared for residents to the end of their lives, this being linked to category of home and funding. Perhaps this is something that could be addressed in the future………..

In preparation for the 3 days we sent out postcards to homes informing them of our impending visit…

We also made up resource packs with information touching on each of the End of Life Care Pathway six steps.

We were joined by Justine Bennett from the Gloucester Carers Providers Association (GCPA) on our tour of the Forest and Oliver Dobbins and Angela Mews from GCC for our Gloucester city visits.

We visited 41 homes and the outcomes following the visits included:

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Care Planning en

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The End of Life Care PathwayStep 2

Assessment

Step 3

Coordination

Step 4

Delivery ofhigh quality

Step 5

Care in the

Step 6

C ftDiscussions

Step 1

Assessment,care planning

and review

• Agreed care

Coordinationof care

• Strategiccoordination

high qualityservices in

differentsettings

• High quality

Care in thelast days

of life

• Identification

Care afterdeath

• Recognitionthat end of life

as the endof life

approaches

• Open honest plan andregular reviewof needs andpreferences• Assessingneeds of

coordination• Coordinationof individualpatient care• Rapid response

i

High qualitycare provisionin all settings• Acutehospitals,community,

h

of the dyingphase• Review ofneeds andpreferences forplace of death

care does notstop at thepoint of death.• Timelyverification andcertification of

Open, honestcommunication• Identifyingtriggers fordiscussion

needs ofcarers services care homes,

hospices,communityhospitals,prisons, securehospitals and

place of death• Support forboth patientand carer• Recognition ofwishes

certification ofdeath or referralto coroner• Care andsupport of p

hostels• Ambulanceservices

wishesregardingresuscitationand organdonation

carerand family,includingemotional andpracticalbereavement

Support for carers and families

Information for patients and carers

Spiritual care services

bereavementsupport

Information for patients and carers

Mary Morgan, Senior Commissioning Manager at NHS Gloucestershire, said:

“When someone approaches the end of their life it can be a difficult and distressing time for them, their carers, their family and

their friends. We have carefully planned these workshops to keep the mood light-hearted, and hope that this will help to remove some of the stress and difficulties for staff in care homes.”

A joint project has formed between key stake holders to develop a Best Interests Form for individuals without capacity as part of our Advance Care Planning focus. DR Hein Le Roux, CCG G.P Lead for Dementia and Mental Capacity is leading the project as part of his fellowship with the support of Gina King, Maggie Martin and other key stake holders such as the Mental Health Trust and GCC (Tina Kukstas and David Pugh). An outline of the project will be outlined in the next issue of the newsletter.

Gina King, EoLC Facilitator

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zz Finding out that homes were using the ACP and we were not aware (especially delighted when a small 8 bedded residential home had introduced the ACP following a talk at a learning exchange meeting),

zz Arranging ACP talks for relatives, staff and residents,

zz Signing up more End of Life Care Link Workers,

zz General discussions around education and training,

zz Forwarding more information relating to:

1. ELCA training modules and contact details for support with ELCA – sue.white@e-lfh.org.uk

2. ACP booklets and information leaflets.

Domiciliary Care

Our next stride forward was to hold another ACP workshop designed specifically for Domiciliary Care. As part of the preparation Gina spent a day shadowing a carer in order for us to supply the material and information the workshop required.

We used a similar approach as for the original workshops and included a quiz, ‘communication tree’, role play and a word search. It was a very interactive afternoon with Plock Court Tennis Centre being an excellent venue, as usual.

We had 25 attendees and these included guests from GCC and the GCPA. The service providers included those caring for older people, learning disabilities, mental health and the homeless. This mix of different providers promoted a platform for good discussions and interactions. The afternoon was a great success and we hope to do more collaborative working in the future.

Maggie Martin, EolC Education Facilitator

Supporting best interests decisions in – moving Advance Care planning one step further

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Care Planning

Responding to the media coverage of the Liverpool Care Pathway

Many of you are aware of the recent negative publicity around the Liverpool Care Pathway. We know that this has caused anxiety and distress among patients, relatives and staff alike. The reporting has been emotive and inaccurate, potentially impacting upon us being able to care well for our patients.

The diagnosis of dying that inevitably precedes the use of the LCP can be difficult requiring multi-professional discussion and careful communication with the patient and family. It remains, however, an important role for all of us in healthcare.

The Liverpool Care Pathway IS NOT:

1. A treatment. It is a framework for good practice in caring for dying patients but should never replace clinical judgement.

2. Euthanasia by the back door. It neither hastens nor delays death.

3. A one way pathway – people can improve and come of the care pathway. The patient is constantly reviewed and sometimes, even though patients are thought to be dying, they surprise us and it is discontinued. We know that predicting the course of illness is never an exact science and we can only make a clinical judgement.

4. A mandate to withdraw/stop/remove/restrict anything INCLUDING hydration and nutrition. We need to think about whether treatments may now be doing more harm than good, for example, IV fluids leading to oedema. A reduced desire for food and fluid

is a normal part of dying. Discontinuing these things should be considered and discussed at ALL times with relatives. It may be felt appropriate to continue with regular review. A patient can certainly be offered a drink, some nourishment if they are alert enough for this.

5. A mandate to ‘DO Nothing’. It means do what the patient needs and care for them with their comfort and dignity at the heart of everything. Observations are usually not needed and can cause distress but assessing for pain/discomfort/agitation is required and is the key focus.

6. A mandate to automatically commence sedative medications. Medications are only used to address symptoms such as pain and agitation and are prescribed initially on an as required basis.

The Liverpool Care Pathway IS:

1. A document that should only be commenced following close discussion with relatives, the medical and nursing team.

2. A document recording a different set of observations with the focus on comfort, dignity and care.

3. A way of facilitating clear communication between changes in shifts, ensuring continuity of care goals.

4. Only as good as the clinicians who use it – the Trust has recently completed a programme of End of Life Care training for all staff grades, nursing and medical.

For further information

http://www.endoflifecareforadults.nhs.uk/news/all/learning-from-peoples-experience-of-last-days-of-life http://www.endoflifecareforadults.nhs.uk/news/all/consultant-nurses-respond-to-negative-media-coverage-of-care-in-the-last-days-of-life

http://www.guardian.co.uk/society/2012/nov/13/importance-open-end-to-life

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12 November 12 Issue 14

“Call for contributions – Case Studies, Letters, Question and Answers, New Posts”? If you would like to submit an article for the next issue of the newsletter, please contact Gina King mobile: 07990 803221 or georgina.king@glos.nhs.uk

Useful websites

Specialist Palliative Care Out of Hours Advice for Professionals

zz5pm-9pm Monday to Friday

zz24 hours cover at weekends and bank holidays

PAGER:

www.endoflifecareforadults.nhs.ukwww.goldstandardsframework.nhs.ukwww.lcp-mariecurie.org.ukwww.cancerlancashire.org.uk/ppcwww.ncpc.org.uk

www.doh.gov.uk www.nice.org.uk/www.carers.org/www.the3ccancernet.org.uk www.palliativedrugs.com/

Change of Number for Out Of Hours Advice Line

Due to problems with receiving messages on our pagers we are now using the hospital switchboard to get messages to us for out of hours advice.

If you need specialist palliative care advice out of hours; after 17.00 until 09.00, weekends or Bank Holidays please ring

0300 421 2222If you are phoning within GRH or CGH contact the switchboard