Carers Online

2.1 Information and communication
2.2 Care delivery
2.3 Last few days of life
2.4 Care after bereavement and death
2.5 Recommendations
2.6 Measurement and research
2.7 Further information

3.1 Background
3.2 Summary of the findings
3.3 Further information

The conference aims to:

• disseminate learning from the projects funded by the Care for the Carers of the Terminally Ill (CfC) programme
   
• promote information resources for professionals developed via the CfC programme
   
• highlight examples of partnership working, locally and nationally, to support carers
   
• develop better understanding of the political context and research agenda with regard to carers of the terminally ill
   
• provide networking opportunities for professionals working with carers.

The conference will be ideal for:

• hospice professionals working with carers and/or responsible for planning carers’ services
   
• other professionals working with carers
   
• those responsible for carers’ issues in national organisations and Government agencies.

For further information, and to download a booking form and programme, go to www.timetocare.org.uk.

The End of Life Strategy, published by the Department of Health in July 2008, recognises that the “family, including children, close friends and informal carers of people approaching the end of life, have a vital role in the provision of care” (p.14).

The strategy identifies three key principles with regard to carers:

1. Carers are a central part of the team, and should be treated as ‘co-workers’.
    

2. Carers have their own needs and, if they provide substantial care on a regular basis, they are entitled to an assessment by their local authority.
    

3. Carers should be able to access services, regardless of the condition of the person they are caring for.

The strategy goes on to discuss the key issues with regard to involving and supporting carers of people approaching the end of life, and put forward recommendations to local authorities responsible for implementing the strategy. These are summarised below.

• Carers should be included in planned discussions with the dying person, and should be provided with support. Their needs will depend on individual circumstances.
   

• It should be recognised that the needs and wishes of the carer and the person they are caring for may conflict. Carers may also be afraid to ask questions and might need help to think through the issues.
   

•  Information that will help carers plan for the future is important, e.g. the likely course of the illness, financial support, work issues and what to do when someone dies.
   

• Carers face significant losses whilst they are caring for someone and after the person they care for dies. They can become isolated. These issues should be addressed early, to help carers cope more effectively in bereavement.
   

• Carers’ needs and ability to cope should be reviewed at different stages throughout the illness.
   

•  An emergency plan should be discussed with the carer, for situations where the carer is unable to provide care due to an emergency or crisis.
   

• Cultural and faith issues should be considered, e.g. in discussions about practical arrangements at the time of death, and afterwards.

• If the patient is admitted to hospital or a care home, the service provider should ensure the carer is involved in the delivery of care in whatever capacity they wish, in liaison with the patient.
   

• Caring for someone at home can be overwhelming for the carer, and they may feel “unsettled by the disrupted normality of the home” (p.110). The support they may need includes practical help in the home, information about medication, and someone to talk to at any time when they have concerns. Many calls to rapid response teams (part of Marie Curie’s Delivering Choice Programme) and hospices are from carers needing psychological support.

• The care plan is most important during the last days of life, and should recognise that the needs of the carer may be different from the person they are caring for at this point.

• Bereavement support should be readily available and offered to all carers, family members and close friends.
   

• Professionals should be given training on how to provide appropriate support to bereaved people.
   

• The role of young carers should be respected at the time of death and afterwards.

• “Carers should be offered an assessment of their needs and a formal ‘carers care plan’, either with, or separately from, the cared for person.” (p.113)
   

• There should be systems and resources in place to ensure services can meet the needs identified in an assessment.
   

• Health professionals should give advice to carers and families about how to deal with unwanted medicines after the person dies.
   

• Training is needed to ensure staff in health and social care, as well as the voluntary and independent sectors, can communicate effectively with people who are dying and their carers about end of life care issues.
   

• All health and social care, and other organisations providing end of life care and bereavement support, should be able to provide information on how to access culturally appropriate bereavement and support services.
   

• Information should be available in a variety of formats, including 24/7 helplines and via the NHS Choices website.
   

• Primary Care Trusts should ensure that local strategies for end of life care encompass the needs of carers and families. The Carers National Strategy is highlighted as a useful resource.

• The Department of Health will commission regular surveys of carers and bereaved relatives across all PCTs. The survey will be based on the Views of Informal Carers – Evaluation of Services (VOICES) programme. The VOICES programme assesses the perceptions of carers/bereaved relatives concerning the treatment of the patient, the quality of care and the support received by the carer.

A full copy of the End of Life Strategy is available. 
If you would like further information about Help the Hospices carers policy work, please contact Brian Davies.

In January 2008 a carers’ consultation questionnaire was sent to approximately 250 hospices via email and post, and was available to download from the Help the Hospices website. The objective was to receive feedback and views on the following questions:

1. What information would help you in your caring role?
    

2. What would help you in your caring role?
    

3. How would you like to receive support?

215 replies were received from carers nationwide. 89% of carers (191 respondents) said they received support from a hospice. A total of 48 hospices distributed the questionnaires to carers.

Each of the above questions was subdivided into categories. For each category the carers were asked to tick a box, selecting what they believed to be the relevant priority, with 1 being high and 4 being low. In addition, carers could add further comments for each question, and general comments at the end of the questionnaire.

• Available support services in the local area (67%)
   
• The illness of the relative or friend you are caring for (54%)
   
• Finding financial support, including benefits (49%)
   
• Your legal rights as a carer (39%)
   
• How to juggle work and care for someone (31%)

The comments highlighted a lack of knowledge regarding financial support and benefits. Carers also wanted to know what to expect in the future with regard to the disease progression, including symptoms to look out for. Some respondents specified that they are not working. However, carers of working age commented that more support would have helped them stay in employment, whereas others saw work as a break from caring.
 

2. What would help you in your caring role?

• Being able to take a break from caring (49%)
   
• A 24-hour helpline to provide emotional support (47%)
   
• An increase in carer’s allowance (42%)
   
• Help with the costs of caring, eg travel to appointments (34%)
   
• A short period of benefits and leave from work (22%)
   
• More support from your employer (16%)

There were numerous comments from carers wanting respite or extra respite care. Some carers did not know about carer’s allowance, whereas others were not happy with the amount of allowance they receive.

3. How would you like to receive support?

• At your local hospice (63%)
   
• In your home or the home of the person you are caring for (60%)
   
• Being able to access support at any time of the day or night (58%)
   
• Through your GP or District Nurse (43%)
   
• Being involved in planning support services for carers (25%)
• Through social services (22%)
   
• By using the internet (less than 1%)

There were several positive comments about the support carers already receive from their local hospice. Many commented that they did not have access to a computer.

Download the full results of the consultation paper for carers.

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The Carer’s Assessment Working Group has met three times in 2008. The group is developing guidance on developing processes and documentation to assess the needs of carers in hospices.

If you are interested in helping to review drafts of the guidance, please contact Katy Elton.