An unpaid carer is anyone who cares for a friend or family member who, due to illness, disability a mental health problem or an addiction, cannot cope without support (Carers Trust, 2020a). The population worldwide is ageing, as people are living for longer, despite ill health. As the population ages, the number of unpaid carers is set to increase as well (Carers Trust, 2020b). This, combined with changes in retirement age, means the demographic of unpaid carers is also altering; people will be working until much later in life and juggling work commitments while caring for others for longer (Carers UK, 2019).
The Universities of Sheffield and Birmingham analysed data from 2001 to 2018 and highlighted that almost two-thirds (65%) of today's UK adults will care for family and friends at some point during their life (Carers UK, 2019). This research also revealed that the average person has a 50:50 chance of caring for someone by the time they are 50 years old, which is long before they reach retirement age (at present, 66 years).
With lived experience of caring, the author knows too well how carers can suffer from social deprivation, loneliness and ill health. On many occasions, the only person the author would see in any given day, apart from their immediate family, would be the district nurse. Carers who have family around them are few of the lucky ones, and many do not have this support. Carers also have fewer opportunities to do the things many other people may take for granted, such as having access to paid employment or education, or having time to themselves or with friends, and their choices are limited.
A survey undertaken by Carers UK (2020) found that 61% of carers are likely to report having a long-term physical conditions, disability or illness, and 72% of them said they experienced a mental health condition. Many carers are hidden, something which is especially prevalent for young carers. Hidden carers are those who do not identify or recognise themselves as carers and, therefore, do not access the support available for carers. Thus, they are often providing the majority of care unsupported and alone. For young people especially, this can limit life chances and opportunities. There is evidence that some carers are as young as 5 years, caring for parents or siblings (Children's Society, 2020).
Working carers’ passports
Many NHS staff, including nursing colleagues, are caring for friends or family outside of work, balancing the pressures of caring as well as working.
The West Yorkshire and Harrogate Heath and Care Partnership recognises the contribution of unpaid carers across the local area and aspires to be a place where carers are recognised, valued and support in both their roles, as healthcare professionals or students and carers. The leadership at the West Yorkshire and Harrogate Health and Care Partnership understands that balancing work and care is challenging, and having open, honest conversations about caring responsibilities with managers or colleagues can be hard. This is why the partnership is working with its hospital trusts to implement working carers’ passports, as a straightforward way to discuss and document the flexibility and support a business can give to enable employees to combine caring with work (Carer Passport, 2020).
The working carers’ passport is a record that identifies an employee as someone who has carer responsibilities. For NHS workers, this will be on the electronic staff record or, if they do not have an electronic staff record, this is in the paper employee record. The passport prompts a conversation around a few simple questions, which, otherwise, would have been quite challenging. It intends to provide understanding and support for the carer and supports the works of the organisation or service developing a mutually beneficial arrangement. Its contents are confidential, and it is reviewed periodically, recognising how caring situations can change. The passport is a user-friendly document, with a limited number of questions and minimising the number of personal questions asked. It is intended, where possible, that the passport stays with the employee so that, even if they move departments or positions, it remains in place.
It is crucial that leaders do everything in their power to help their hard-working staff, who deserve nothing less. This initiative has been welcomed with open arms by hospitals in West Yorkshire and Harrogate.
Emerging evidence suggests that investing in support for carers can contribute significantly to the sustainability of health and social care. In particular, studies have shown that early intervention and targeted support for carers reduces carer breakdown and, thereby, limits the use of hospital services, social care and care homes, for example (Princess Royal Trust for Carers and Adass, 2010).
The West Yorkshire and Harrogate Health and Care Partnership recognises the contribution of unpaid carers across localities (Bradford district and Craven; Calderdale, Harrogate, Kirklees, Leeds and Wakefield) and aspires to be a place where carers are valued and given the support they need to manage their caring role and remain in work and education. Carers should not feel they need to make a choice between one and the other, as the consequences of doing so affects more than just them.
With this firmly in mind, and with the support of the partnership leadership, an unpaid carers programme has been created that specifically focuses on improving the outcomes of carers across the area. This programme builds on the foundation laid by the work of public-sector partners and delivered by local voluntary and community organisations. The aim is to make life better for all carers, regardless of age or where they live.
The programme developers recognised the importance of engaging with carers, communities and the voluntary sector to understand the key issues that unpaid carers face and how these can be addressed. This engagement underpinned the foundations of the programme, and the infrastructure has representation from all six localities. A key part of the work is around visiting carer organisations and groups across West Yorkshire and Harrogate to share information, learning and good practice, with the aim of preventing duplication of work and interference. The approach adopted is a partnership approach that relies on everyone being on the same page and working collaboratively towards shared goals.
Another important aspect of the West Yorkshire and Harrogate Unpaid Carers Programme is how the carers agenda is embedded in all the workstreams of the integrated commissioning system, such as the cancer programme and the mental health programme. This has resulted in a natural shift in the way carers are consistently supported at every level. To improve the quality and experience of carers in primary care, primary care networks (PCNs) are being supported to adopt quality markers and are working in collaboration with the West Yorkshire and Harrogate and Primary Care and Community Board to secure clinical leadership.
Quality markers for carers
The quality markers scheme was developed in June 2019 by NHS England and NHS Improvement in partnership with the Care Quality Commission, Carers UK, the Carers Trust, the Children's Society and representatives from general practice. The voluntary scheme was established to build on existing good practice in primary and community care to allow practices to focus on what they can do to further identify and support carers. The markers include identification and registration of carers, awareness, holistic support, flexible appointments and easier access (NHS England, 2019).
There are significant benefits to adopting these markers, including improving the health and wellbeing of the carer, reducing crisis and family breakdown, eliminating differences that exist in support and appropriately managing demand in primary care.
The role of clinicians as community carer champions at a local and regional level is critical to this work but needs further development. Tackling health inequalities is one of the main aims set out in the partnership's draft five-year plan.
Conclusion
Carers, alongside the healthcare workforce, are a vital asset to people who require long-term care, and the organisation will continue to work collaboratively to share knowledge and skills, so that quality can be improved and, importantly, carer needs can be identified and addressed sooner rather than later. The aim is to support carers in having a fulfilling life of their own, by using best practice through implementation of quality markers in primary care and personalised-care approaches. Ultimately, this will mean a lower cost of care and a greater impact on lives. Nurses play a crucial role in the support of carers, and they are often the most compassionate face of the NHS. They are well placed to identify carers and provide practical advice on how to care for their loved one or reassurance and moral support. They also can help carers recognise the vital role they play and the importance of ensuring their own wellbeing in addition to that of their loved one. Further, nurses can support carers who require hospital support for their loved ones by enabling them to feel welcome and facilitating visits, by, for example, allowing flexible visiting times and involving carers in care planning conversations. It is important to put people, rather than organisations, at the centre of the work, and to ensure that all resources, such as skills, expertise and money, are used to the maximum benefit.