Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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OPAAL Exhibits at National Cancer Patient Conference

On Friday 13th March Angela Clarkson Volunteer Coordinator from Sefton Pensioners’ Advocacy Centre  and I had the great pleasure of displaying the work of the National Cancer Older People and Advocacy programme at the National Cancer Patient Conference in Manchester. From the moment I entered the exhibition hall at 07:50 until the conference closed around 5.00 I was struck by the lively buzz and enthusiasm displayed by everyone, patients, speakers and those exhibiting their services. This conference catered for up to 300 delegates.

Our stall attracted a good many cancer patients, carers and friends all keen to learn how independent advocacy could help them manage the impact of cancer on their lives. Other professionals too came to chat and soon we were networking, exchanging contact information with commissioners as well as service providers who we look forward to working with in the near future.

Our display board with stories of older people affected by cancer

Our display board with stories of older people affected by cancer

We spoke to many people who wished they had know about this  service as they believed their loved one could have benefited. We also spoke to many others who wondered why they did not have this service in their area.

I was able to share some of this feedback with Mr Sean Duffy the National Clinical Director for Cancer NHS England. Sean was aware of the programme and was very pleased to endorse our work, in particular with Peer Volunteers. Like us he believes that the support of peers can be invaluable as they come from a position of knowledge and experience and often display great empathy towards others who find themselves in similar situations.

Sean as the keynote speaker spoke of the fact that we have a lot to be proud of, there are more patients treated, more patients surviving, better patient experience than ever before and greater use of effective treatments.

Sean Duffy with Kath Parson

Sean Duffy with Kath Parson

However he was clear when he said we have much more to do, close the survival gap with other countries; address continuing poor outcomes for some cancers; growing incidence; reduce cancer waiting times; address the financial context of cancer.

Sean also spoke of the 5 year forward view which contains:-

  • radical upgrade on prevention and public health
  • greater personal control
  • breaking down institutional barriers
  • new models of care
  • national leadership local flexibility
  • shared vision and partnership with voluntary sector (cancer is an exemplar)

Key challenges facing us include:-

  • Tackling late diagnosis
  • Supporting people living with cancer
  • Better support for older people

Promote a proactive approach to primary care – explore new models as in the 5 Year forward view, significantly shift early stage diagnosis from 56% to 66%, making earlier diagnosis happen, accelerate co-ordinate and evaluate our work programmes.

More people living longer is a good thing! But we need to ensure we support them to live well with recovery packages, rehabilitation and re-ablement programmes, better models of follow up and greater co-ordination with social care.

I was delighted to hear Sean talk of systems being designed around the needs of patients (not patients forced to adapt to the system).

One third of cancer diagnoses is now in 75+’s, half of all cancer deaths are in this age range. Sean referred to the Macmillan commissioned IPSOS Mori survey aimed at exploring how older people feel about their cancer, the attitudes they hold to treatment and care and what good care would look like. The OPAAL Cancer Older People and Advocacy programme is proud to be involved with this work and we look forward to making useful contributions.

Stuart Gibson Chair of the Lancashire and South Cumbria Cancer Partnership Group also displayed great interest. Having had cancer himself he is well aware of the impact on people when cancer enters one’s life.

Stuart Gibson with Kath Parson

Stuart Gibson with Kath Parson

I was able to attend a well attended very informative workshop on Improving the Quality of people’s ‘Experience of Care’ led by Lisa Edwards. Lisa is the Project Delivery Lead for the NHS Experience of Care project and spoke movingly of the lessons she had learned concerning talking to patients about what they wanted and what good care would look like for them. Lisa shared her vision of ensuring that patients’ experience of care is central to the commissioning and care delivery on offer to all. With many patients in the room we were able to learn about what matters most to people when we think about how to make the patient experience better. I left with a lot of food for thought I aim to share with colleagues to help shape our future independent advocacy programme.

During the day we were also able to contribute to the event video ensuring that Independent Advocacy retains a permanent place in material supporting better patient experience.

Angela Clarkson with the display stand

Angela Clarkson with the display stand

All in all Angela and I had a fantastic day, made all the more special by being able to listen to many cancer patients’ stories.

Kath Parson, Chief Executive, OPAAL


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“My cancer treatment” website launched for England

Have you ever wanted to find and compare NHS cancer services in your area?

If so, My Cancer Treatment is a great place to start.  Simply type a postcode, cancer type or hospital into the Find Your Treatment search box.

My Cancer Treatment finds services near you and reports on the quality and standards you can expect from each one.  You can compare results and use these to decide where  to have cancer treatment. Advocates will also be able to use the website to gather information. They will then be able to share that information with the older person affected by cancer they’re supporting to help them make decisions about their treatment and care.

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The information on My Cancer Treatment is collected independently by an NHS quality assurance team, the National Peer Review Programme hosted by NHS England. This programme has nationally assessed NHS cancer services in England since 2001.
Now these assessments are easily available for all patients and the public to access, on an easy to use website. Whether you are newly diagnosed, seeking a second opinion or trying to find some information for someone else, My Cancer Treatment can help.

The key objectives of the National Peer Review Programme focus on improving care for people with cancer and their families by:

  • Ensuring cancer services are as safe as possible
  • Improving the quality and effectiveness of care for cancer patients
  • Improving the patient and carer experience
  • Providing development and learning for all involved
  • Identifying local examples of good practice and encouraging their use nationally, so everyone can have access to the same quality of treatment

The website has been developed with full involvement from a group of cancer patients, to ensure that the tool is easy to use and helpful. Julie Wolfarth and Sian Hallewell, two patient representatives who were involved in the development of the website.

When asked how they think My Cancer Treatment can help, Sian responded; ‘It empowers people, because information is power and sometimes when you receive that diagnosis it’s too hard to go and find this information, if you already know it’s there, then you are one step ahead aren’t you.’

What advice would you give someone who has received a referral and gone onto My Cancer Treatment and is concerned about what they have read?

Julie says ‘sit down with your GP, discuss what you’ve been looking at and say I would like to consider this hospital and this hospital. GP’s would generally refer to hospitals close to where their practise is because that is the traditional route. In a way it’s up to us, as patients and carers to make sure that the treatment we are being offered, is the treatment we are happy to have’. 

Sian also commented that ‘There is nothing to stop you asking the team you’ve been referred to those difficult questions. I would write them down before you go and take someone with you so perhaps they can ask those difficult questions’.

Affected by cancer? Want to make a difference to cancer services?

My Cancer Treatment is looking for new patient and carer representatives to join their team and review NHS cancer services in England. Places are limited and applications close 1st September 2014. Click here to find out how to get involved.

Marie McWilliams, OPAAL

 


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National Cancer Survivorship Initiative

There are currently 1.8 million people in England living with and beyond cancer, and 2 million across the UK as a whole. The aim of the National Cancer Survivorship Initiative (NCSI) is to ensure that those living with and beyond cancer get the care and support they need to lead as healthy and active a life as possible, for as long as possible.

What is the National Cancer Survivorship Initiative?

The National Cancer Survivorship Initiative (NCSI) is a partnership between NHS England and Macmillan Cancer Support, co chaired by Sean Duffy, National Clinical Director for Cancer, and Ciarán Devane, Chief Executive of Macmillan Cancer Support.

Originating from the Cancer Reform Strategy (DH 2007), the NCSI from 2008 – March 2013 was a partnership between Department of Health and Macmillan, with great support from NHS Improvement.

Our aim is to ensure that those living with and beyond cancer get the care and support they need to lead as healthy and active a life as possible, for as long as possible.

NCSI recently posted a great video which explains what they’re about. Have a look and see what you think:


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NHS England End of Life Workshops

Several weeks ago Kath Parson blogged about the series of workshops being held around England during the  autumn to engage with the public and professionals on proposals to improve end of life care. These workshops follow on from  the publication of More Care, Less Pathway, the report of the independent review into the Liverpool Care Pathway

I attended the workshop held in Crewe and it was indeed attended by a range of professional, voluntary sector and members of the public who had experience of the Liverpool Care pathway – both good and bad.

The workshop was introduced by Ian Leech  from the People in Partnership Group (Dying Matters). The aim of the workshop was to gather views on the proposals and  ideas on improvements to care in the last days of life. This was done by group discussion with  questions being asked, around the following themes,  to initiate discussion:

Personal palliative care plans:

•             Do you agree with our proposal to encourage the use of such plans?

•             What should it be called?

How might personal palliative care plans work in practice?

•             Where should it be kept?

•             How can it be used most effectively?

When should personal palliative care plans start?

•             Who should start the conversations and how?

How can we improve our proposals for improving care in the last days of life?

•             What else is missing from our proposals?

A copy of the Engagement Document  can be found on  the NHS England website.

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For those unable to attend the workshops but who would like to have input on the work being carried out you can also record your views on that website. The engagement period for this work ends on 6 January 2014.

Kath Curley

Cancer Advocacy Project Lead, Beth Johnson Foundation