Extra caring environments: rising to the cancer challenge

Jeremy Porteus blog 2020
Jeremy Porteus
Chief Executive, Housing Learning Improvement Network

Last year I visited an excellent extra care housing scheme where residents were fundraising for cancer research. They had recently lost a neighbour to the disease. The inclusive nature of the community meant residents were inevitably touched by their friend’s illness and death and felt the human need to do something in response. 

NHS England’s 2015 national cancer strategy[1] was disappointingly quiet on the role of housing in supporting people with cancer. However, the application process for one tranche of NHS England’s transformation fund, announced last year, suggests that might be changing. The ‘recovery package’ approach aims to help patients have more personal care and support.

As NHS England says, “For a patient this means working with their clinician to develop a comprehensive plan outlining not only their physical needs, but also other support they may need, such as help at home or financial advice.” [2]

We’re all familiar with the numbers around our ageing population but we’re less acquainted with the equally dramatic projections around cancer. There are currently around 2.5 million people living with the disease in the UK. By 2030 that number will be 4 million. Many of those people are – and will be – over 65. Indeed, the number of older people living with the condition is expected to treble between 2010 and 2040. Some 60% of new cancer diagnoses are for people over 65.

As the cancer support charity Macmillan Cancer Support recently pointed out, despite these figures, older people experience worse outcomes – including a widening gap in mortality rates – than younger people. They are less likely to report a positive experience of coordinated care, are more likely to be diagnosed after an emergency admission and to experience social isolation.[3]

At a policy level, our response to the figures cited above should be building both mainstream and specialist housing that can facilitate the care and support needs of people living with cancer and other long term conditions. I ask myself, can we take a lead from those housing with care providers that have made considerable progress in championing dementia-friendliness in their strategic policies and operational practices?

With this in mind, and with Dementia Awareness Week this month, it is worth noting the recent Housing and Dementia Charter[4] is testimony to how the sector has impressively built an understanding of dementia so that it can work in a way that minimises risks and enhances the wellbeing for people living with dementia. I believe the sector should similarly be better equipped to become better cancer aware too.

In my view, housing, health and care commissioners, providers and policymakers must develop a more holistic response to the growing cancer challenge faced by increasing numbers of older people. For example, by considering the social or environmental challenges older people face on discharge from treatment or at end of life, providers can work together efficiently to deliver the person-centred services in the best environment and achieve better personal outcomes. We all need to focus on what matters to someone with cancer.

In addition, specialist housing, care and health providers should work with older people so they can co-design their own care plan and identify how they wish to be supported to live and die at home, whether within their schemes or in the community.

For many people living with cancer, appropriate and high quality housing can promote self-care, support treatment and help avoid future admissions to hospital or residential or nursing homes. This is evidenced in a selection of excellent advocacy stories on the experiences of older people captured in Facing Cancer Together (opens new window) and Every Step of the Way (opens new window) by the Older People’s Advocacy Alliance.

However, building on these personal stories and professional-led local NHS England transformation plans, we need a more collaborative approach that can deliver the full benefits of the range of options available so that care and treatment moves from hospitals to the community. That will empower users and ensure respect for their values, preferences and needs, including their housing choices.

Faced with the crisis of a cancer diagnosis or the rigours of an exhausting treatment programme, information and choices about appropriate, high-quality housing will play a vital role in the decisions people make about their care. Furthermore, housing with care providers should be working with local NHS cancer services and organisations such as Macmillan to ensure residents can receive treatment in their homes if that is their wish – as it usually is.

So what next for the sector? We want to create a new norm where a person’s housing is seen as playing a vital role in their recovery from cancer or ensuring individuals can receive treatment at home as they approach death.

The residents in the scheme I referred to earlier are doing their bit to face the growing cancer challenge. Shouldn’t we all be emulating them?


Posted on by Angela Cavill-Burch

Design of extra care facilities does not help with this as we have found to our cost. i have often seen those with cancer having to spend their final days in a hospital bed placed in their living room because the bedrooms in these facilities are too small for two single beds one of which is a hospital bed. Many only have one bathroom exposing someone who is immune compromised to extra risk from all those "under trained, under funded" care-workers coming in. Until the designers of extra care units start listening to people like me with lived experience of the limits their poor designs put on people nothing will change for the good of sick people living in such units.

Posted on by Nicky Ellison

I agree with Jeremy's thoughts and I have found that these are very locally based outcomes with the gel being organisations such as Macmillan - and the success dependant on whether the cancer treatment and care is pulled together by such organisations or sitting in silos with health, ASC and family. We need to be braver in talking to all our residents in supported living about how they can take control of areas of their lives even when they cannot change the final destination. It remains a taboo that I think is instigated by illness feeling uncomfortable with the idea rather than our residents - it is about empowering and enabling individuals to make choices and take control. It is such a rewarding experience when a difficult, painful journey is travelled in a positive, honest and supportive way. Maybe what is needed is a structured approach as to how we can raise this awareness on a generic level not just individually. Lack of flexibility on homecare provision is also a factor as palliative care is time consuming and requires intensive input to be delivered effectively.

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