Written evidence submitted by Macmillan Cancer Support (COV0070)

 

Executive summary

 

  1. People living with cancer are still not always able to access the food they need because they cannot access sufficient online delivery slots, are not able to physically get to shops or find that the food currently available is more expensive than they would usually buy.

 

  1. Government should prioritise and take a more active leadership role in coordinating access to food for vulnerable people, including those affected by cancer.

 

  1. Government should issue clear and timely guidance to the public at a national level about how people who define as vulnerable can get support. This will be very important if Government measures requiring people to stay at home are extended.

 

  1. Government should ensure that supermarkets continue to improve their accessibility and the service they provide to the vulnerable.

 

About Macmillan Cancer Support

 

  1. Macmillan Cancer Support is a registered charity providing information and support to people with cancer.

 

  1. People living with and affected by cancer are likely to be amongst those who feel the impact of the COVID-19 crisis the most. Since the outbreak of COVID-19, calls to Macmillan’s Support Line service have increased as people with cancer seek support with the impact of the outbreak. Currently, around 1 in 3 (1,155) calls to our Support Line are related to COVID-19.

 

  1. Macmillan surveyed 200 supporters across the UK to understand the ways in which COVID-19 has had an impact on people affected by cancer. Several respondents reported challenges securing online delivery slots with major supermarkets, and difficulties in knowing where to go for support.

 

We submit evidence relevant to the second question addressed by the inquiry. Are the Government and food industry doing enough to support people to access sufficient health food: and are any groups not having their needs met? If not, what further steps should the Government and food industry take?

 

Identifying which groups need support to access sufficient food

 

  1. Not everyone who needs support to access food has been identified.

 

  1. Macmillan Cancer Support estimates that across the UK up to 240,000 people with cancer[1] fall into the ‘extremely vulnerable’ classification because of their specific type of cancer or their treatment regime. There are still occasions where people are not notified of their status as being ‘extremely vulnerable’. If someone has been missed from this ‘shielding’ list there must be a straightforward process for them to register and then receive the concomitant support (e.g. prioritised food delivery slots or volunteering help from the NHS volunteering platform).

 

  1. Of the three million people with cancer in the UK who aren’t classified as ‘extremely vulnerable’, many will continue to have a range of needs that are unrelated to COVID-19, or have been exacerbated because of the pandemic. These include people with cancer who are socially vulnerable, who no longer have care support, or have fatigue or other side effects of cancer or its treatment. It is crucial that this vulnerable group of people are identified and supported to access food.

The following elements are important in identifying people who are more vulnerable but who are not formally shielding:

  1. Government needs to provide clear guidance to local authorities and anyone else making decisions about who should get support that recognises the different forms that vulnerability can take. 

 

  1. Charities should be given flexibility to refer people who they know to be vulnerable to further support.

 

  1. Offers of support must not be solely dependent on people coming forward, otherwise people who do not identify themselves as in need of emergency support will be excluded.

 

  1. Communication with people who might be need in support must not exclude people who do not have access to the internet.

 

People with cancer are not having their needs met.

  1. As stated above COVID-19 poses additional challenges for people with cancer. Macmillan estimates 625,000 people in the UK are estimated to be facing poor health or disability after treatment for cancer – approximately one in four (25%) of those living with cancer[2]. The impact on mental health wellbeing is especially significant for people affected by cancer. We have heard from people living with cancer who are not in the shielding group but who are concerned that they will not be prioritized for treatment for COVID-19 because of a perception that treatment is being prioritized for ‘healthy’ people. They are therefore afraid to leave the house to shop.

 

  1. Macmillan Cancer Support is still hearing through helplines and through our volunteering services that people with cancer are still finding it difficult to get access to food. People do not know where to go for support and are therefore putting themselves at risk by going to shops or are running out of food.

 

  1. There is still a lack of availability of online delivery slots with major supermarkets. Some people with cancer who are on the clinically most vulnerable list are finding it difficult to get priority delivery slots. These are being made available, but just not in the quantity required for those vulnerable groups. Many more online delivery slots need to be set aside for vulnerable groups.

 

  1. There are practical barriers to getting food for those who cannot secure an online delivery. People with cancer may want to avoid using public transport and taxis for fear of contamination, which means carrying heavy loads of shopping on foot. Low stock loads in the past meant that people were forced to make multiple visits to shops, increasing potential exposure to COVID-19.

 

  1. There is confusion over who is entitled to help if individuals don’t match the criteria of being at  clinically high risk but who are still vulnerable. People presenting at GP surgeries who identify themselves as vulnerable but who do not meet the clinical criteria need to be signposted to adequate support.

 

  1. Alongside the physical and emotional impact of cancer, a diagnosis also brings with it a risk of financial hardship. Four in five people with cancer are on average, £570 a month worse off because of their diagnosis.[3] Many of those affected might shop in a range of places, not just supermarkets and struggle purchase supermarket own brand products, which are typically better value for money then big brands, and rely on food that is on special offer. The lack of availability of own brand products and freezes to discount deals means people struggle to afford the food that is available.

 

  1. Difficulty in getting food which meets dietary needs. Cancer and its treatment can affect eating and those affected may in some cases have to follow a special diet.

 

What further steps should the Government and food industry take?

 

  1. Government should prioritise and take a more active leadership role in coordinating and increasing access to food for vulnerable people, including those affected by cancer.

 

  1. Government should enable charities to refer people in need directly to services that can help them receive food, through whatever means is appropriate for that person. This will enable support to reach those whose circumstances are the most serious and who may not otherwise be able to complete forms or access help.

 

  1. Government should issue clear public facing guidance about how people who might need it can access support. This guidance needs to be accessible to all. It should not assume internet access, nor should it assume that everyone will have friends or family or a local support network or friends and family. Not everyone with support needs will be in contact with charities or with local authorities at the local level and there is a danger that people in need will not come forward for support.

 

  1. Government should provide clear guidance to anyone who is making decisions about who should get support. This needs to be flexible enough to recognise the varied circumstances in which individuals may live. At a local level, Councils must have a consistent triage process, developed with input from charities, and use free phone lines with which people can refer themselves.

 

  1. Government should insist that supermarkets improve their accessibility and service as per the issues outlined below

 

  1. Supermarkets should give priority access to shopping in stores and online as adjustments in line with the Equality Act 2010 without needing to formally identify people on a list of people designated most vulnerable. When a person is diagnosed with cancer, they are automatically classified as disabled for the purposes of the Equality Act. This protection from discrimination continues even when there is no longer any evidence of the cancer.

 

  1. Supermarkets should introduce automated processes online and on the telephone if not already in place, to enable customers (new and existing) to register as vulnerable with that supermarket.
  2. Supermarkets should expand their click and collect offer so that people with cancer and their carers who are able to leave the house to shop come into contact with as few people as possible.

 

  1. Supermarkets should review and freeze costs of key items, maintain discount deals and ensure sufficient stock of discount or basic equivalents.

 

 

 

 


[1] NHS England and NHS Improvement estimated in mid-March that 200,000 people with cancer needed to be contacted about shielding because they were deemed to fall into the ‘clinically extremely vulnerable’ classification in England, which Macmillan estimates if a similar ratio to incidence in 2017 applied across the UK, it could equate to around 240,000 ‘clinically extremely vulnerable’ people in the UK. Since this estimate was made additional people living with cancer may have been identified as ‘clinically extremely vulnerable’.

 

[2] Figures quoted from expert consensus collated as part of Macmillan Cancer Support (2013) Throwing light on the consequences of cancer and its treatment. Consensus was reached by consulting with a range of UK experts in the field, including members of the National Cancer Survivorship Initiative (NCSI) Board, the NCSI Pelvic Cancers Project Steering Group, the Consequences of Cancer and its Treatment Collaborative (CCaT) and other leading researchers and professional societies. Macmillan Cancer Support, Throwing light on the consequences of cancer and its treatment. Available from: http://www.macmillan.org.uk/documents/aboutus/ newsroom/consequences_of_treatment_june2013.pdf [Accessed August 30 2016]

[3] Macmillan Cancer Support, Cancer – A costly Diagnosis’, 2019 https://www.macmillan.org.uk/_images/cancer-a-costly-diagnosis-report-2019_tcm9-354186.PDF