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Listening to carers’ voices – the value of carers in evaluating the imapct of services

We all know that the NHS and Social Care are massively dependent on the “thin grey line” of unpaid carers who look after ill, disabled or elderly family members, friends or partners.  Illnesses that can be physical, mental, or both. In fact, the line is not that thin. The 2011 census reported that 6.5 million people in the UK are carers with the figure expected to rise significantly.  And the population of carers is not static. Carers UK estimate that each year around 2.1 million people become carers whilst almost as many cease their caring role as the person they care for recovers, moves into a home or passes away. 

Because of their caring role these unpaid carers often have vast experience of NHS and social care services. My neighbour Sandra’s 80 year old husband, for example has Parkinson’s disease. Sandra is therefore an absolute expert on the quality and responsiveness of the local GP, community nursing services, community OT, the memory service, the pharmacist, the aids and adaptations service, the Parkinson’s specialist nurse, the emergency and non-emergency ambulance service and more recently the local hospital which she currently attends twice a day to feed her husband, during his admission following a fall.  He, of course, is an expert too, from a patient’s perspective.

However, the perspective of carers and patients is likely to be subtly different.  Care closer to home is great for an ill person who wants to remain in his own home for as long as possible, but it may not feel so good to his exhausted, elderly wife who is expected to take on the role of chief carer 24/7 and service co-ordinator and wondering how she will cope.  Releasing someone early from a forensic unit might be really positive for the patient looking forward to his new life back in the local community, but not viewed in the same way by his mother who is fearful of her own safety and that of her other family, and also what this means for her own freedom.  It is therefore really important to capture and understand both of those perspectives when reviewing or evaluating the impact of our/your services.

Carer insights about the services, which the person that they care for receives, are often both insightful and informative. They may have been a carer for many years and have experienced services changing over that time. They may have had to fight for those services. They may also know nothing about the flagship services which have been set up to support people like them.

Involving carers in work to assess service impact (such as evaluation) is not always easy or straightforward. Carers may be under so much pressure due to their own caring role that they become tearful and upset when someone takes the time to hear their views, or they simply lack the time to speak with us. If they only have a few free hours a week they may (quite understandably) be reluctant to spend it talking to someone doing an evaluation. 

Identifying carers can also be difficult as they are not a visible group of people. Details are not always recorded on health or social care records. The recent NHS Long Term Plan may eventually help here, with its encouragement for a national roll-out of carers passports which will enable staff to identify someone as a carer and involve them in the patients care.

In addition, many carers have their own health problems to cope with and rarely leave the house. The Carers Trust report that 65% of older carers (aged 60 years plus) have a long-term disability or health problem themselves. 69% of these carers say that being a carer has had an adverse impact on their mental health.  Being creative in our approaches to finding carers who are willing to talk to us in order to inform our work is vital and facilitating easy access, with or without an advocate or support person is important. It is essential to be ‘carer led’ for example establishing where they would be comfortable to meet and prioritising this, recognising that they may be uncomfortable or embarrassed to meet in some environments.

The following good practice can help in ensuring that carers’ voices are heard:

  • Actively seek feedback from carers, not just from patients/service users when assessing the impact of service changes.
  • Involve service staff and service users in identifying and contacting carers.
  • Offer carers a range of ways to have their views heard including group meetings, phone calls and face to face in a place of their choice.
  • If possible, get help from local carers groups and other local organisations which may regularly work with carers such as specialist disease organisations (eg Parkinson’s UK). However, remember that the majority of carers will not belong to such groups and if you only include these carers you may not get representative feedback.
  • Ensure questions are phrased sensitively and you are prepared to deal with people who may be emotionally and physically exhausted. This should include ensuring you have links with carer organisations who can offer support, should the person require and consent to this.  It’s not ethical to just walk away.
  • Ensure that carers understand the purpose of the questions you are asking and the work you are doing. And explain what will happen with the results eg who will it be reported to. 
  • Ensure you communicate in language which carers can understand.
  • It can sometimes be really useful to work closely with organisations such as Healthwatch or patients/carers groups to ensure that the language you use throughout your conversations with carers is understandable to them.  Whilst carers are often experts on the impact of services, they are generally not experts on NHS “speak”.  And this doesn’t have to be medical speak. The term “winter pressures” means a lot to most NHS staff, but is a meaningful phrase to most lay people !  Likewise “..we will be reporting this to the CCG..”       
  • As with any exercise where you are asking people to share personal information with you, ensure that confidentiality (or non-attributability) is maintained and that carers are assured of this.

Despite all the challenges involved in tracking down, getting consent from and meeting up with carers, their contribution in helping us to understand the impact of our service developments makes it a really worthwhile exercise.  I truly believe that half an hour with Sandra (and others like her) would be more valuable than a briefcase full of family and friends test responses for anyone who wants to truly understand how well local services are doing in supporting the frail elderly where I live.

 

Jenny Treanor

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