Tag Archives: carers

Why it’s vital that carers of people with cancer are supported through the Carers Strategy

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 (beparker@macmillan.org.uk)

MPs grilled by Cancer Voices at Macmillan Question Time

Luciana Berger MP, Lynda Thomas, Martyn Lewis, Jo Churchill MP, and Norman Lamb MP

Luciana Berger MP, Lynda Thomas, Martyn Lewis, Jo Churchill MP, and Norman Lamb MP

By Nafisa Shk, a Macmillan Cancer Voice

On the 9th of September I was given the opportunity to attend the Macmillan Question Time 2015 at the house of parliament. Having never attended before, I was beyond excited about this opportunity, mainly because cancer has affected me and my family majorly. Having lost my mother 3 years ago to cancer, I decided to dedicate my time and effort being involved in campaigning with Macmillan. The event itself was designed to put forward some key points for the MPs to follow upon.  We the people however played a vital role in not just asserting these points, but also using our own experience with cancer to convince the panel on why these issues are paramount. The aim of this event was to give a platform to people affected by cancer, Cancer Voices and Health Care Professionals from different  backgrounds  to discuss the most vital parts of their journey and what needs changing.

Macmillan’s desires four essential points to be put into action:

  • Integrate local services and share best practice across the NHS by creating new boards of local experts, commissioners, and patients called Cancer Alliances
  • Improve life after treatment by fully-funding a five-year Living with and Beyond Cancer Programme which will roll out new initiatives to improve support. An example would be Macmillan’s Recovery Package which measures quality of life for people living with and beyond cancer to understand how they should be supported
  • To recruit more staff for in-demand roles such as Clinical Nurse Specialists; as well as make sure staff have the right skills, training, and behaviour; that they deliver high-quality care; and support carers
  • Introduction of new measure of patient experience to drive improvements in care more generally.
Cancer Voices

Cancer Voices, Macmillan staff and MPs mingling at the Cancer Voices reception

The panel was headed by Television Presenter Martyn Lewis and consisted of three MPs representing the three main parties: Jo Churchill (the Conservative MP for Bury St Edmunds), Norman Lamb (Liberal Democrat MP), Luciana Berger (British Labour Co-operative MP) and Macmillan’s Chief Executive Lynda Thomas.  Lynda made a very crucial point about how Cancer does not have to be a life sentence and how important it is to give support to people post cancer, particularly going back to work and living a normal life. Most importantly, Lynda resonated what most of us affected by cancer hope for, achieving better cancer outcomes by working on preventive measures first.

The point I most related to was to deliver high quality care by recruiting more staff and providing up to date training for the right skills, and the support for carers. Personally, as my Mother’s carer I could relate to why it’s necessary that carers are given the care and support they deserve. The stress and effects of cancer can affect not just the patient, but the whole family particularly the carers. Amidst being an advocate for my Mother’s cancer, and her treatment, me and my Sister who also was also a carer for my mom, had to deal with a lot of mixed emotions. I felt the care and the support we expected from the system was not enough.  Carers need to feel safe and protected, given the right amount of resources and training to get through this time in their lives.

People chatting at the Cancer Voices Reception

Small groups discuss the Cancer Strategy during the Cancer Voices reception

The main aspect of this event I noticed was how much freedom we the people were given. This not just included the close interaction between the members and the cancer voice who attended, but most importantly, the chance to meet and communicate our thoughts and experiences with various local MPs. There were no barriers of any kind, be it emotional or professional. We were given an opportunity to lay the forefront issues concerning our individual experiences facing cancer and its consequences. For instance, I got the opportunity to speak candidly about my experience of my family’s cancer journey during the time my Mother got diagnosed with Robin Walker, the Conservative Party MP representing the Worcester constituency.  Robin listened to all of us patiently, giving back suggestions and ideas of his own explaining his own personal experience with cancer.

All in all, being a Cancer Voice with Macmillan is something I would highly recommend anyone with a passion to fight this disease. Macmillan’s has a brilliant team, and the ability to bring together people from different backgrounds and cultures, campaigning and advocating for a cause that unites everyone. I have in the past attended many of their events, and have always been treated with utmost kindness and respect. The thing that struck me the most at the Question time event was how everyone was given a chance to tell their story. The Public Affairs team were highly trained, and knowledgeable, but most importantly compassionate and good listeners.

What question would you have asked our panel?

The Care Act swings into action (and we still care)

Sarah Benger, Senior Policy Analyst (@Mac_PolicyDept)

Today is a big day – and it isn’t about the General Election.

Today, the Care Act comes into force. It is an Act that overhauls social care legislation in England for the first time in 60 years. An Act that received strong cross party support. An Act that affords extra rights to carers.

For the first time, carers will have the same legal right to a needs assessment and support as those that they care for. Local authorities will also have general responsibilities towards their residents, including carers, such as keeping them safe, supporting their wellbeing and providing good information about local support services.

And for Macmillan, it is an important milestone in our Do you care? campaign.

As the Care Bill passed through Parliament, we lobbied to make sure that the Act recognised the need for local authorities and health bodies to work together. Because we know that there’s a major hurdle that stops many carers from accessing support: identification.

Mcareers-01 (2)ost people caring for someone with cancer don’t see themselves as a ‘carer’. As Lisa told us, after supporting her fiancé Luke who had cancer, ‘I didn’t really consider myself his carer. I just thought of myself as his fiancé. As far as I was concerned, he wasn’t well so I was looking after him.’

This means that people like Lisa will sometimes need help to know that services are available to them. And that their own health and wellbeing is important, despite the tendency to place their loved one’s needs first.

Health professionals are really well placed to do this, yet many aren’t identifying carers when they may have the chance. At least 70% of carers come into contact with health professionals while they are caring, often while accompanying the person they care for. Yet only 1 in 10 carers is identified by health professionals in hospitals, and just 1 in 7 is identified by a GP. [1]

So, welcome, Care Act. We have high hopes for you.

Statutory guidance under the Care Act sets out the need for health bodies to work with local authorities, particularly to identify carers with unmet support needs.

But we know that you alone aren’t enough to make sure every carer gets the support they need. Therefore the campaign must go on (see our policy report for more).

Caring for someone with cancer? We can help you.

Working with carers? We can help you.

[1] Carers Week. Prepared to care? Exploring the impact of caring onpeople’s lives. 2013.