Macmillan’s new report, Cancer Then and Now, shows that more people than ever are living longer following a cancer diagnosis and often with the complex consequences of treatment. There are now an estimated 2.5 million people living with cancer in the UK, a figure that is expected to rise to 4 million by 2030.
The implications of this are significant. More and more people are taking on caring responsibilities for a friend or family member with cancer. Since 2011 we’ve seen the number of carers of people with cancer in the UK rise from 1.1 million to nearly 1.5 million, an eye-opening increase of nearly 27%. Without this vital support, many people with cancer would have to face it alone.
As the story of cancer changes so too has the role of carers of people with cancer, who are now providing more hours of care than ever before and undertaking tasks which are more complex in nature. With carers taking on increased levels of responsibility, their support needs have also grown. The contribution of unpaid carers across the country is invaluable and without them the health and social care systems would be under impossible pressures. But no-one who looks after someone should have to face it alone, and we need to ensure that there is adequate support to meet their growing needs.
It’s therefore extremely welcome that the Government has committed to developing a new Carers Strategy for England to ensure that carers are supported to live well whilst caring.
What do cancer carers want to see in the Carers Strategy?
Macmillan’s response to the Carers Strategy call for evidence was informed by new research and the experiences of over 400 cancer carers living in England.
Through our response we wanted to raise awareness of carers of people with cancer and the huge contribution they make, but we also needed to challenge the common misconception that cancer is an acute and terminal illness. Around half of those diagnosed with cancer today live for at least ten years after diagnosis. Despite this, many people aren’t aware of the impact and long-term consequences of the condition and how this can affect friends and family members who become carers.
It’s therefore essential that the Carers Strategy recognises the unique role and the significant contributions that carers of people with cancer in England make to our society.
Since 2011, the nature of the support that carers of people with cancer provide has become increasingly varied. Carers are now more likely to provide hands-on personal care, undertake healthcare tasks and help the person with cancer navigate the complexities of the health and social care system. Yet many carers are still receiving little or no support.
Macmillan’s research found that whilst almost a third of carers of people with cancer are providing vital healthcare support for the person they’re caring for – including changing dressings, giving medication and managing infection control – 40% of them have not received any training or support to do this.
Whilst the experience of caring is different for everyone, there are many similarities in the issues which cancer carers face. This includes the important role of health professionals in identifying carers and signposting them to support, and the need for health and social care professionals to involve carers as equal members of the cancer care team when the carer chooses this.
And, at present there’s a disconnect in the system; many carers don’t come into contact with their local authority or the voluntary networks where much of the available support can be accessed. Instead they will typically interact with health professionals, such as when attending appointments alongside the person they care for. But our research has found that only 1 in 5 healthcare professionals say that they always identify carers and signpost them to support.
What is Macmillan calling for?
Macmillan is calling for the strategy to recommend mechanisms which will improve the identification and signposting of carers to the right support. This could include placing a statutory duty on health bodies requiring all health professionals in these settings to identify and signpost carers to support. Unless this is routinely done, carers will continue to miss out on having their needs assessed and having adequate support put in place to address these.
We should also be moving towards making carers a more integral part of the cancer care team; valuing their expertise, sharing information more readily between professionals and carers, and training carers in how to provide care safely. Furthermore it’s vital that the strategy recognises the need to support health professionals to support carers through appropriate training.
There’s an important role for the strategy to recognise and support the rights of carers of people with cancer who are currently in employment. And finally, it’s essential that the strategy also recognises the role of the welfare system which many carers rely on whilst caring.
What happens now?
In early July the Minister leading the strategy, Alistair Burt MP, announced that he was stepping down as Minister for Community and Social Care. His replacement David Mowat MP brings the carers and the cancer brief together at the Department of Health, presenting a new opportunity to take a holistic approach to supporting carers and the people they care for.
It’s essential that the Westminster Government now prioritises the development and alignment of policies that promote better cross-working between health and social care professionals, the voluntary sector and carers to ensure that appropriate and easily accessible support is put in place.
And whilst the strategy will only determine future policy affecting carers in England, Macmillan continues to influence on carers issues throughout the UK.
In Wales, Macmillan is working as part of the Wales Carers Alliance to help refresh the Welsh Government’s Carers Delivery Plan and Carers Strategy, raising concerns around how local authorities will meet new enhanced duties to identify and meet the needs of carers through services delivered locally.
In Scotland, Macmillan welcomed the emphasis on support for carers within the Scottish Cancer Strategy, as well as the new support measures promised to all carers in the Carers Act. Our focus now is on ensuring the promised improvements to carer support are delivered. We will monitor this closely and continue to ensure the needs of those caring for someone with cancer in Scotland are recognised.
Whilst Northern Ireland is the only region of the UK without recent legislation to improve support for carers, Macmillan has joined forces with other charities in a new Carers Coalition to raise awareness of the huge contribution made by people caring for family members and friends. And we will continue to push the Northern Ireland Executive for progress.
In England, Macmillan will be working closely with the Department of Health in the coming months to ensure that the voices of cancer carers are heard and represented in the development of the strategy.
For more information about Macmillan’s work to support cancer carers across the UK, please contact Ben Parker (firstname.lastname@example.org)