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Over 1 million people in the UK are supporting a terminally ill loved one this Christmas

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Community nurses can be the key to identifying and supporting carers of people living with a terminal illness, says Dr Emma Carduff

dr emma carduff

dr emma carduff

Dr Emma Carduff

This Christmas, more than one million people in the UK are expected to be supporting a family member who has a terminal illness.

Caring for a family member or friend with a terminal illness can be both rewarding and exhausting. At the same time, many carers will have been caring for a number of years and some will be coming to terms with the death of their family member or friend.

Carers providing more than 50 hours of care per week are more likely to report mental and physical health problems including anxiety, depression and chronic ill health.

Most carers will not receive the support they need to enable them and their loved one to experience the best possible quality of life.

Identifying carers in the community

Many carers are not identified by health professionals as being in need, and neither do they request help to fulfil their caring role. Family carers often neglect their own needs, prioritising those of their loved one over their own.

”Family carers often neglect their own needs, prioritising those of their loved one over their own”

Recent research highlighted three main reasons why carers are not identified as having a caring role: firstly, carers do not necessarily identify with being a ‘carer’ – they are a husband, wife, son, daughter, brother, sister, friend or neighbour;

Secondly, as the cared-for person’s illness progresses, carers are so busy with the caregiving role that they lack time to think about themselves – this is particularly the case in the last few weeks of life. This is emphasised if the preferred place of death is at home, when carers may be fearful of leaving the house and are getting very little sleep.

Lastly, carers do not necessarily see their needs as ‘legitimate’ as caring is not in itself a medical problem.

For this reason, unpaid carers are less likely to make appointments with their GP until a crisis in the caring situation arises. There is also confusion about whose role it is to identify and support carers and support is often reactive, rather than proactive.

”Carers do not necessarily see their needs as ‘legitimate’ as caring is not in itself a medical problem”

What can community nurses do?

In the final days and weeks of life the district nurse will have the closest relationship with the family. For carers to access support, they first have to be identified. Community nurses (practice nurses and district nurses) can have an active role putting carers on the carer register at their practice (when the cared-for person and carer are registered in the same practice).

Community nurses will also be well placed to assess the needs of the carers and to regularly review the carer’s needs as the illness trajectory progresses.

Carers value information about services, when they need it, but this does not necessarily have to be delivered by general practices themselves, particularly given current constraints in general practice. We advocate that practices work closely with third sector organisations to enable appropriate sign-posting.

Finally, nurses can provide reassurance to the carer. The dying process is uncertain but carers want information about the likely trajectory towards death, it gives them confidence that their loved one will die with dignity and be comfortable.

By identifying carers, assessing their need and co-ordinating appropriate and timely services, community nurses can positively impact the carer during bereavement. Carers do not necessarily need much, and many want to continue caring, however they need to be enabled and empowered to do so.

Many carers want to be listened to and recognised for the role they have – a role that nurses are well placed and skilled to do.

Dr Emma Carduff 

The Marie Curie Support Line provides free, confidential support and practical information on all aspects of terminal illness for patients and their families. If your patients’ carers need support this Christmas then they can contact Marie Curie on 0800 090 2309 (The Support Line will be open every day, including weekends, from 9am-5pm from Christmas Eve to January 3).

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