Improving the Cancer Journey in Powys.

 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 “My aim for this role would be to enable people in Powys to access support closer to home, by linking them in with their local community assets and organisations, raising awareness of activities/support groups that they may like to engage in, improving their Cancer journey and addressing what matters most to them.”

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

Powys Teaching Health Board

Powys County Council

The Bracken Trust

Credu

PAVO 

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.

 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. 

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. 

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. 

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. 

Mudiad Meithrin - Why Play Matters.

Tell us about Mudiad Meithrin and how it started.

Mudiad Meithrin was born during the 1971 Bangor National Eisteddfod, as the Cymdeithas Ysgolion Meithrin Cymraeg (Society of Welsh medium Nursery Schools).  Our aim is to ensure that every child in Wales has the opportunity to benefit from Welsh-medium early years experiences.  

Over the past 50 years, Mudiad Meithrin has firmly established itself in the national consciousness as the Welsh-medium early years specialist.  Today, it supports a national network of Cymraeg i Blant (Cymraeg for Kids) groups and Clwb Cwtsh informal Welsh language classes, alongside its traditional Cylchoedd Ti a Fi (Welsh-medium Stay and Play groups), Cylchoedd Meithrin (Welsh-medium playgroups/nurseries) and dedicated Welsh-medium training through Academi for the sector from initial qualifications through to innovative CPD short courses and accredited childcare qualifications.

In your opinion, what is the most beneficial aspect of Mudiad Meithrin’s work?

Mudiad Meithrin provides accessible, local Welsh-medium activities for families across Wales from birth to school age.  As well as providing affordable, community-based Welsh-language childcare options for parents across Wales, Mudiad Meithrin also helps to build community networks through participation in and with the local groups.  The friendships made and developed by both the children and their carers builds support networks across our communities, both rural and urban.  

Research has shown that children raised bilingually benefit in many ways, do you have any tips for parents wanting to support their children bilingually? 

The best advice is for parents to make it fun and try not to force your child to use a particular language at any time.  Going to the local Cylch Ti a Fi or Cylch Meithrin is a big help … as you and your children will be able to socialise with other families who also want to raise their children bilingually.  The more opportunities you have to hear and practice speaking both (all) languages the more the children will naturally want to use them.  

There are a huge range of books, TV programmes and Apps available to help support the use of Welsh in the home. Choosing a few favourites to start will encourage you to use them and over time you will find yourself looking for more to add to your collection.  

If you want to learn Welsh or just develop your confidence a bit more, then there a range of courses available, both online and in-person.  Clwb Cwtsh is a great way to start if you have young children, and courses are available across Wales.

If someone was new to the area how would they find their local group and sign up? 

The best way to find your local Ti a Fi group (Cylch Ti a Fi / Stay and Play group) or Cylch Meithrin (Welsh-medium playgroup) is to use the ‘Find a Cylch’ function on our website here: Search for a Cylch - Meithrin .  Once you’ve found your local Cylch, you can contact them directly to sign up or for more information.  Many Cylchoedd also have their own social media pages.  Once you have found your local group, following their social media pages can be a good way of making that first leap and then keeping in touch once you’ve been.

Why is play important for children and how do you think the pandemic has impacted children’s play?

Children learn through play, and young children don’t differentiate between playing and learning.  Different kinds of play help children develop different types of skills.  Collaborative play helps them develop their social and emotional skills as well as understanding how turn-taking works in different situations.  Structured play opportunities help them develop their fine and gross motor skills.  Putting things in and out of containers might be frustrating for us adults, but it helps children to develop skills they need for later formal learning.  Just moving and using their muscles helps them to learn how their body moves and improves their coordination … squidging their peas with their fingers actually helps them to hold a pen or fork when they’re older!

Many of our children have seen their opportunities for unstructured, free play restricted over the past few years.  As families were encouraged not to meet and socialise, children of all ages missed out on opportunities to make and nurture friendships with minimal adult intervention.  

For those children born during the pandemic, especially in early 2020, the pandemic heavily impacted their early experiences of play.  With Stay and Play groups not able to meet in person, many only interacted with other members of their immediate family for a considerable length of time.  With playgrounds also kept closed in those early days, access to outdoor public play spaces was limited.  A factor which impacted families living in homes with no private outdoor space considerably … without a garden you can’t easily play ‘tag’, kick a ball, or just sit crunching the leaves from the trees.

What is the most valuable thing you have learned about the positive impact of play for children? 

That free play is important … it’s both free (in terms of cost) and unstructured (the children get to decide the rules).  Two things that are essential for our children to develop the skills that they need as they grow.  Encouraging our children to be creative and use what’s available instead of feeling pressured into buying new toys and gadgets all the time.  Free play feeds their imaginations … pillowcases can be superhero capes one day, a magic carpet the next.  Cushions can be buses, castles or a pirate island as required.  

Mostly though, the positive impact of play is that it helps to connect our children with those around them.  The time spent playing, laughing, babbling and generally having fun together helps us all to enjoy that time and build the bonds that last a lifetime.

If you could change one thing about play provision for children, what would it be? 

Increase unstructured outdoor play opportunities and spaces for children.  For many families, homes are comparatively smaller than for previous generations, with outside play space at a premium.  The increase in car use and traffic generally means playing football down the middle of the street isn’t an option for most of today’s children, and many homes have ‘lost’ some of the play potential of their outdoor spaces as the need for parking spaces increased.  Our children also spend more time than previous generations in formal childcare outside the home, so opportunities for child-regulated outdoor play experiences can be limited.  We need more playgrounds, more parks, more open spaces where children (and their families) can run around, build a den and play imagination driven community games.  Places where families can enjoy the outdoors and encourage free play and creativity, whatever the weather throws at them.

Where did the idea for ‘Forest Cylch,’ come from?

Some Cylchoedd Meithrin operate fully (or almost fully) as outdoor settings and this has inspired us as a Cylch Meithrin to think about increasing our outdoor practice. The ‘Forest Cylch’ ethos is based on the ‘Forest School’ concept and we have depended heavily on improving our learning with an accredited trainer running sessions with us in Llanerfyl. We think that children learn better through play and that playing outdoors provides physical and cognitive benefits. 

What inspired you to train as a forest school leader?

Mirain, our Cylch leader, is undertaking a Level 5 qualification (in childcare) and has chosen this as her end-of-qualification project. So although Mirain won’t be a fully accredited ‘Forest School’ practitioner, she will embed much of her learning in the way she plans everyday activities incorporating the expectations of the new curriculum.

What are the benefits of forest school? 

They say that there isn’t such thing as bad weather only the wrong type of clothes! That is true most of the time although no-one would want to be outside in torrential, cold rain! Most of the time, however, we recognise that children enjoy learning through play outdoors and enjoying being immersed in nature. We have seen first hand how they develop their play using natural resources (tree stumps, leaves, pinecones) and how they love roasting marshmallows on an open fire under supervision! We have invested in warm, insulated coats for staff and in dry suits for the children so that (inappropriate) clothing is never an excuse or reason for not going out!

How do you plan to embed the forest school principles into your practice?

Embedding these principles will be easier as we move our setting location to Ysgol Cwm Banwy with its access to expensive green fields and a sensory garden. We will of course have our designated outdoor play area where the children will be inspired to learn and create using all that nature has to offer!

If you had one top tip, or piece of advice about children’s wellbeing what would it be?

Appreciating the positive impact of play in that it helps to connect our children with those around them. The time spent playing, laughing, babbling and generally having fun together helps us all to enjoy that time and build the bonds that last a lifetime.