Whilst many of us are already losing count of the number of mince pies we have eaten and counting down the days until Santa arrives, Christmas can be an especially isolating time for those caring for a dying loved one.
Becoming the carer of someone with a terminal illness is often a gradual process. Hence, those caring for a terminally-ill family member will often not identify themselves as a ‘carer’ but simply as a wife, husband, son or daughter. While many describe it as a fulfilling and rewarding experience, caring for someone at the end of their life can be especially intense and will often place significant emotional and financial pressures on the carer, and their physical health.
But many are not getting the support that they urgently need. They are often only identified when their loved one is in the final weeks or days of life, at which point their own wellbeing tends to take a back seat. A new report by Marie Curie reveals that there are more than one million people in the UK supporting a family member who has a terminal illness.
General practice can be a natural source of support, but carers do not present with a ‘carer symptom’. Their needs may be hard to assess and are likely to change over time, perhaps as their loved one’s condition worsens. Many have difficulties in adjusting to life after the passing of their loved one, particularly in the first few months when they are likely to be at their most vulnerable but when the services that were arranged around the person they were caring for stop. Evidence shows that proactive contact from a GP at this point is highly valued by carers.
I would encourage all GPs at their next practice meeting to consider how approachable and supportive their practice is for carers – the RCGP among others provides excellent resources on this, recommending that the practice must promote a culture of ‘carer awareness’ that actively involves everyone in the practice.
Once the needs of carers have been recognised as a priority, the next step will be to appoint a lead who is responsible for developing a carer policy for the practice. The carer lead does not have to be a member of the clinical staff and might well be a practice manager or a member of the reception staff – the key thing is that they have an interest in carer’s issues and are able to inspire others to get involved. Carers are then more likely to be identified during everyday encounters and consultations. Such opportunistic identification might involve asking reception staff to make a note of who requests repeat prescriptions, appointments and home visits for patients with care needs, or looking at who accompanies patients to surgery appointments and asking them if they are carers. On the other hand, it is just as important to encourage self-identification amongst carers – displaying information in the surgery that invites them to notify you about their caring role or invites people who have carers to tell you who they are.
Once they have been identified, you can provide carers with up-to-date information in the form of a carer pack. As well as outlining the support that the practice offers, this might also include useful resources such as a letter that gives consent for the carer to have access to relevant medical information. Steps can also be taken to improve the wellbeing of carers by encouraging them to look after their own health. This might include offering health checks or improving their access to healthcare by offering them flexibility with appointments. Building connections with local support services and voluntary sector organisations can help the practice to stay up to date with the services and benefits are available locally and nationally. This can then form another key aspect of carer support services as the practice can signpost carers to organisations who have detailed and current knowledge about what is available. A directory of local support services will be available from your CCG or local authority and information and support is also available via organisations like Marie Curie.
Dr Catherine Millington-Sanders is a GP in Barnes and commissioner for end of life care. She is currently the clinical lead for a partnership between Marie Curie and the Royal College of GPs.
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).