NHS England’s new Commitment to Carers recognises that “helping carers to provide better care and to stay well themselves will contribute to better lives for those needing care”.
But what does this mean in practice, and how can care providers and paid workers most help carers?
The 2013 State of Caring survey found that the majority of carers whose health had suffered as a result attributed this to lack of support.
Listening exercises carried out as part of the Commitment to Carers reflected what carer organisations say is most important to carers, including recognition of their role and that they may need help, information, flexible care provision and being respected, involved and treated as an expert in care.
NHS England has pledged to support care staff to identify, involve and recognise carers as experts, and as individuals with their own needs, choices and aspirations, and to investigate approaches to measure the skills, confidence and knowledge of carers.
But first people have to recognise that they have a caring role. The Carers Trust defines a carer as “anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support”. Just as the reasons why someone becomes a carer vary greatly, the variety of tasks that a carer fulfils is diverse.
The Department of Health 2010 paper Recognised, valued and supported: next steps for the Carers Strategy points out that concept of caring is assumed but not overtly recognised in some families. It can take several years for carers to identify themselves as such, particularly when the caring role develops gradually, for example, with the onset of dementia.
Care professionals can help carers work through what it means to be a carer and potentially conflicting emotions about their own role and accepting additional support. It is important that they understand that identifying themselves as a carer will make it easier to get appropriate information, advice and support (including financial) when they need it.
Recognising their contribution
Carers have been steadily gaining specific rights and benefitssince the 1960s. But there is still much to be done to properly involve them in developing, delivering and improving care services.
Dame Philippa Russell has half a century of both caring and campaigning on behalf of carers behind her, and is currently chair of the Standing Commission on Carers. She says: “We have lived through what I regard as a ‘complaints culture’ rather than creating the communication systems and the conversations that enable early concerns to be raised and quality of care to be improved. Now we need a new focus on ‘co-production’ and partnership with carers not only as providers but as expert and valued strategic partners in care.”
Carers bring a valuable outsider’s perspective to services, with views based on real knowledge of a condition or disability combined with a desire to achieve the best possible outcomes for their loved one; this makes them an ideal resource in planning improvements.
Local authorities and other organisations, charities in particular because of their freedom to be more flexible, can provide valuable local and national support to carers, not least encouraging them to make their voices heard. Support groups and online forums offer carers a place where they can offload difficult feelings and share experiences.
As a carer quoted in Dementia: workers and carers together – a guide co-produced with Skills for Care and Dementia UK in 2012to support collaborative working between the social care workforce and carers – says: “The local carers’ centre has been most important because my concerns were treated seriously, and when I needed information and emotional support I was offered a support worker to sit in on assessments and help me fight my corner. Because she understood the system, she could simplify the processes for me. “
Alzheimer’s Society and others offer specific information and training for carers, which can provide reassurance and encourage people find fresh approaches and a different way of looking at things. Providers may offer training in specific areas, such as lifting and handling, use of equipment and continence care, as well as support for carers themselves, such as stress management.
Embedding awareness of what carers have to offer, and the challenges they face, throughout provider organisations helps ensure working collaboratively is reflected in everyday practice.
One mother, after complications arose following simple surgery because clinicians did not listen to concerns about her child’s anxiety levels, felt the hospital only paid lip service to the idea of involving carers, and were too focused on set procedures and processes to listen to what she had to say.
In her blog she suggests carers ask health and care providers:
NHS Choices suggests adopting a range of approaches, including:
· A carers champion within the organisation to take primary responsibility for ensuring their needs are considered
· Carer awareness training for all staff (co-delivered by carers)
· Links to local carer organisations to explore ways to offer joint support
· Systems and processes that promote carer identification and recording
· Clear best practice guidelines for working with carers, supported by a charter setting out what carers can expect and a carer strategy outlining the organisation’s goals and how these will be met.
Involving carers of all ages is a matter of common sense because of their close understanding of not just the condition of the person they care for but that individual’s needs and wishes. A psychologist quoted in Recognised, valued and supported: next steps for the carers strategysays: “By working jointly with carers, linking our expertise with theirs, we have found better reported outcomes in terms of carers feeling better able to deal with the progressive nature of dementia.”
NHS England clinical director Dr John Young believes professionals need to listen more, and to go out of their way to talk to carers, especially about mental health changes that might not be picked up otherwise. His blog gives the example of an elderly woman about to be given the all-clear at a hospital assessment unit until he rang her daughter, who insisted her mother had been ‘not right’ for several days; a few simple questions indicated (correctly) delirium as a result of new medication.
Working together requires an open, non-judgemental and tactful approach built on mutual respect and understanding what each party has to offer and the challenges they face. This means actively encouraging carers to express opinions and concerns and making time and space for proper conversations.
Try not to jump to conclusions if a carer is abrupt or impatient – not only may they be under pressure, they will perhaps feel they need to be forceful on behalf of their loved one. As Dementia: workers and carers together advises: “Each time you have contact with the carer, imagine what might have happened already that day to contribute to stress and tiredness.” Simply asking how they are, picking up on signs of stress (even if they say they’re fine) and helping them accept that their own needs are legitimate, can have a positive impact.
And homeworkers and personal assistants should always bear in mind that they are a guest in someone’s home and should try to fit in with domestic routines, observe any ‘house rules’ and recognise the fine line between friendliness and over-familiarity.
Solving problems together
Ongoing, open-minded communication is vital. Don’t be negative about something the carer suggests or requests – it may not initially seem feasible, but try to be flexible and think creatively about ways to make it work.
Don’t ignore strategies a carer has discovered to be effective, or be critical of the way they do things – although you could find tactful ways to suggest alternative approaches – which can be aggravating and upsetting for carers. In an example in Dementia: workers and carers together a homecare worker “came bustling in and turned the radio off. It had taken me ages to settle Dad with the soft music he likes so much. (The care worker) said it was boring, but Dad soon got restless when he couldn’t hear the music”.
Remember that, other in residential settings, family and friends usually provide most of the care; your job is to lighten the load, so you need to find out from the carer what would most help them.
Day care centre staff, for instance, could provide aspects of care that are difficult for the carer at home, such as helping someone have a shave or haircut. As Dementia: workers and carers together points out, what happens during time spent with you can either help or hinder the carer. Supporting the individual to retain abilities will have a positive impact at home, but over-stimulation may leave the carer picking up the pieces later on.
Although one person will generally be identified as the primary carer, other relatives and friends may also be involved; try not to jump to conclusions about who does what. Sibs, a charity representing the siblings of disabled people, points out that brothers and sisters have particular in-depth personal knowledge of the person being cared for, and often a special understanding and strong bonds.
A whole family approach improves the chances of care being sustained effectively, and reduce the risk of young carers undertaking inappropriate roles or feeling excluded.
Carers need to feel able to rely on services and individual care staff. Changes in arrangements, delays and cancellations that upset carers’ best laid plans imply a lack of understanding of the challenges they face daily and the impact even minor disruptions can have, which will undermine the provider’s credibility and damage trust the carer has in them.
It’s particularly important to offer reassurance and recognise that carers have made a difficult, often painful, decision to put a loved one into residential care, and to find out how they would like to continue to be involved. They may want regular updates and the chance to suggest ideas for overcoming difficulties, or to help at mealtimes, for instance.
Frontline carers have a valuable role to play in sharing their knowledge. Dementia: workers and carers together says: “Being introduced to the world of social care can be bewildering and you can help by using clear explanations and plain English.”
Carers appreciate regular communication, but use appropriate methods and check if it is a good time to talk, especially about confidential matters. Think about tone and language, and be tactful when talking about any problems, or the carer could feel they are being blamed. They want to hear about achievements, not just challenges.
The way managers in different care settings work with and talk to carers has a massive impact on the service culture. They can be role models for good communication and encourage staff to adopt the same approach.