Around 1000 Powys residents are diagnosed with cancer each year in Powys.
A programme funded by Macmillan
Cancer Support called Improving
the Cancer Journey in Powys is working in partnership with the council,
health board and delivery partners like the Bracken Trust, Credu and ourselves
to ensure that support is available closer to home for both the person and
their wider family following a cancer diagnosis.
We thought it’d be a good idea to
find out more about how the programme came about, how it works, who’s involved
and introduce Penny Tanner who has recently joined
us as the ICJ Community Connector. Penny has a clear vision for her role and told us
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| Penny Tanner - ICJ Community Connector |
Penny will be on hand to ensure that every Powys resident with a cancer diagnosis who are referred to PAVO, is offered a personalised ‘what matters to me’ supportive conversation. The first step is for people to complete a simple concerns checklist either online or on paper. This checklist helps the person to consider how they are feeling and what concerns they may have. Once submitted, Penny will then have a conversation to explore the person’s holistic needs and produce a tailored care plan. This plan sets out the concerns and how and what support is available to address them whether it’s an information sheet on diet or a referral to the Bracken Trust for complementary therapy or to join their yoga class.
What do we mean by people living with cancer?
When we refer to ‘People Living
with Cancer’, we mean people with a cancer diagnosis, their unpaid carers,
their families and those important to them. We also include people who have
been referred with a possible cancer diagnosis and are awaiting the results of
that referral.
We also abbreviate to the acronym
PLWC.
How did the ICJ in Powys programme come about?
Conversations first began with Powys Teaching Health Board back in 2016 following two things
· a successful project launched in 2014 in Glasgow led by the local authority called Improving the Cancer Journey, Glasgow. You can read the final evaluation report published in September 2020.
· results from Macmillan’s Patient Experience Survey where it was clear that Powys patients were feeling more isolated and less supported than residents in other parts of Wales.
Macmillan was keen to test out
how a model of care could be put in place in a more rural county and Powys was
chosen as the first Welsh project.
Cancer is also classed as one of the Big 4 Diseases within the Powys Health and Care Strategy - a joint strategy produced by Powys Teaching Health Board and Powys County Council - both partners in the programme. Together the three key strategic partners launched the programme in late 2019 and appointed a Programme Lead and a Project Manager. A Communications and Engagement Officer was appointed in early March 2020.
What’s the key aim of the
programme?
The key aim is to bring quality
personalised support closer to people’s homes following a cancer
diagnosis. With no district general
hospital in the county, the vast majority of residents have to leave the county
for tests and treatment. When residents are
in between treatment or check-ups, or discharged from the hospital setting, they
can often feel alone and not know where to turn for advice, information, or
support.
The ICJ in Powys programme aims
to fill that gap and give support at a local level to improve the person’s
well-being and quality of life in whatever way matters to them.
Support can be
- emotional,
- practical,
- physical,
- financial,
- social, or
- spiritual.
Support tends to focus on the non-medical things that affect people like needing help to collect prescriptions or do some shopping, someone to come in and tidy the house or do some gardening or cleaning. People may be worried about their work situation and need help with financial matters from accessing benefits, considering their pension, or applying for a blue badge. Unsurprisingly, transport and getting to hospital appointments is another key factor that impacts both people’s health and wallet.
Who’s involved in the programme?
Macmillan Cancer Support
How are relationships and crossworking managed?
- One of the key successes already has been the daily screening meetings which take place in the council. The Assist service take calls every day about care and support needs and these are discussed in detail the next morning so help can be identified. PAVO and Credu both current attend these screening meetings and all residents presenting with a cancer diagnosis are signposted to PAVO for a holistic needs assessment. Carers are signposted to Credu
- The peer support group meetings take place every six weeks allowing all outreach workers, community connectors and the lead nurse from the Bracken Trust and the Lead Cancer nurse from the health board to come together and share any good practice, any barriers and to discuss options to improve the offer of a supportive conversation to Powys residents who have a cancer diagnosis.
What are we doing well?
The Assist screening meetings are
working well and have seen an increase in referrals not just for people living
with cancer.
The council’s Money Advice team
have expert knowledge about benefits and support to help someone who is facing
increased costs re- travel, heating etc…
All delivery partners are working
hard to offer people living with cancer the support they want about the things
that matter to them. This results in a
tailored package of care not an off the shelf solution.
Together we are raising awareness of the programme both locally, regionally, and nationally. Sue Ling, ICJ Communications and Engagement Lead and Sharon Healey, PAVO Senior Officer Health and Wellbeing, both attended the Macmillan conference in London in early November. Sharon took part in a panel debate and spoke about the role the third sector are playing in Powys to support people living with cancer.
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| left to right: Sharon with fellow panel colleagues – Sheila Small and Emmily Ochieng from the Hillingdon NHS Trust and Sian Webb from NHS Kent and Medway. |
How are people living with
cancer involved?
The programme set up a stakeholder reference group in September 2020 which became the Journeying Together Forum comprising of ten people with lived experience either as someone living with cancer or as an unpaid carer. The forum meeting bi-monthly and discuss barriers, coproduce publicity materials, complete surveys, contribute ideas and hold the programme to account with representatives attending both the Operational Board and Strategic Programme Board meetings.
How does someone access support?
If you are supporting someone living with cancer and they’d like some additional support then please do refer them to Penny who is contactable on 01597 828649 / penny.tanner@pavo.org.uk
How do I find out more about the broader ICJ programme?
The ICJ webpage hosts a lot of information about the programme including both video’s and a compendium of patient stories that is worth viewing. It also has various reports and copies of all press release issued by the programme. Here Dr Ruth Corbally talks about the what matters to you / eHNA conversation that is on offer to anyone living with cancer in our county.
What Other Resources are
available?
Books About Cancer resource.
In late 2020 a grant was sought to purchase four sets of Macmillan recommended books. These books are available for loan from Powys libraries. You can order online using the library catalogue.
Support Closer to Home leaflet.
CNSs in hospitals across Wales
and England are often praised for their empathetic approach to patients. They
are kind and knowledgeable and many offer Powys patients a holistic needs
assessment in the hospital setting. However, we know that sometimes that isn’t
necessarily the right time for the person who has just recently received a
cancer diagnosis to take this on board.
So, the forum suggested a simple A5 leaflet be produced which CNSs could
hand out to Powys patients. This signposts them to the key delivery partners
and explains what type of support can be given closer to home from collection
of prescriptions to dog walking to benefits advice. 10,000 leaflets were printed. and distributed
during the summer.
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| Support Closer to Home - Leaflet |
A chance to join in Powys ParkWalk/ParkRun.
Although known as parkrun, lots
of people walk the route and in October the ICJ programme joined forces with
parkrun to promote and encourage people living with cancer to join in. If
someone you are supporting might be interested they just need to register and download their bar
code. It’s a simple as that. There are
two parkruns in the county currently – one in Builth Wells and one in Newtown.
Both start at 9am on a Saturday morning.
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| Powys Park Walk / Park Run. |
Listening to Patient Stories - Key Themes.
In 2021 people living with cancer were asked to share their experiences with the programme.
In listening to and then analysing the stories captured, ten key themes emerged which seemed to be common for the majority of Powys residents.
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| Listening to Patient Stories. |
- Pre-diagnosis, diagnosis and prognosis.
- Co-ordination of care.
- Emotional support and care.
- Patient voice and choice.
- Carers rights and voice.
- Practical support offered in the county.
- Relationships and communication.
- Transport and travel.
- Education and information.
- Advance Care planning.
Understanding these key themes will help the programme consider gaps and improve awareness, connections and relationships with acute sites, health care professionals and all involved in caring for someone with a diagnosis.
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