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. 

My Life My Wishes - Live Well Dying Matters.

"How people die remains in the memory of those who live on…"

 Dame Cicely Saunders (1918-2005)

We're all familiar with the Powys Ways to Wellbeing with,"Start Well, Live Well and Age Well," Just as important to consider is how we end our lives, it's time to look at "Dying Well."

Live well Dying Matters

Death and dying can be taboo topics in our culture, that's why weeks like "Byw Nawr- Dying Matters," are important to raise awareness and break down those awkward barriers. How we approach the end our lives is just as important as how we choose to live our lives. It's just as relevant in death to still have your say, yet often we do not have those all important conversations.

• 76% of people living with cancer had thought about the fact they may die from cancer.
• Only 35% of people who had thoughts and feelings about their death had shared these feelings with anyone.
• Only 8% had spoken to their health care team about the subject. Macmillan (2017)

Background to Advance Care Planning

In June 2018 the PTHB identified the need to have an advance care planning document to enable conversations around death and dying. Extensive planning and research was carried out in creating a working document, enabling people to open up to conversations about end of life planning. In January 2019 the draft Advance Care Planning Document was rolled out to be extensively tested with important feedback leading to a co-produced and designed final version. 

The next step was to train special Advance Care Planning Champions as ambassadors to spread the word and make the document widely available. The first group to be trained were link nurses, soon followed by Nursing & Residential Care Homes, Voluntary Organisations, Welfare Rights and many more nurses. By "Live Now Dying Matters," week 13th- 20th May 2019, fifty ACP champions had been trained and were presented with their ACP certificates and badges at the launch day on the 13^th May 2019.

ACP Champions receiving their mugs and badges.

Making a Difference 
Dying is a sensitive topic that can be difficult to come to terms with. An ACP won’t stop the emotional pain but it can help to make it a little easier. Kim Bailey attended the launch of the ACP on the 13^th June and shared her story and experience of having an ACP and how this has been of benefit for her and her family

A Patient’s Perspective on the My Life, My Wishes Document in Powys

“I found the “My Life, My Wishes” document very helpful especially the “My Last Days” section where I can tell my family and friends how I want to be cared for and where, without upsetting anybody. Before this document I had a piece of scrap paper in my mum’s cupboard with my funeral wises written on – now they are in my document where all my family can access them. This document is so helpful to bring up a subject that no-one really wants to talk about, once given a cancer diagnosis. I wish this had been around 7 years ago when my dad had his diagnosis, as this is something as a family, we had never spoken about. So, towards the end of his life, we had to bring up the subject but if we had had “My Life, My Wishes”, we could have spoken earlier about this. We would have known his wishes and would have known how he wanted to be cared for.”

Kim Bailey – May 2019

An ACP Champion’s Perspective on the My Life, My Wishes Document in Powys

Kathryn Jarvis from Credu shares her reasons for becoming an Advance Care Champion.

"I put my name down to do the training because I believe people should have the death they want.We don’t want to think about dying but it’s going to happen to every single one of us at some point in our lives.

As an Adult Carers Outreach Worker I work with unpaid family and friend carers of people with a wide range of health issues, mental ill health and learning disabilities.

As an ex-carer, caring for my grandad I remember how unsettling it was not really knowing what he wanted and navigating things as best we could.

Future care and our wishes is so important. Do we really spend time to consider where we’d want to be cared for and by who, what treatment we’d want or what we really don’t want. Have we made a will and do have our wishes on funeral arrangements in place? It maybe that you have feelings about the type of service you want- what music, poems, readings or hymns would you want, whether you want to be buried or cremated.

The ‘My life, my wishes- advanced care planning document.’ Has everything in one place. It’s an easy to read document you can pick up and put down when you want. You can add to it. You can discuss it with those around you and make your wishes known."

Are we ready?

What Next?

In difficult times having an Advance Care Plan can help make all the difference. It’s not just for people who are terminally ill. It’s a document that enables us to change our attitude to death and dying, facilitating an opening to enable those important conversations at the end of life. The more death becomes a part of everyday life, for people of all ages, the easier it will be to talk about. If we begin these conversations with young people, then maybe some of the stigma and discomfort will start to ease. If you, or your organisation would like to be an Advance Care Champion there's another training session at PAVO offices, Ddole Road, Llandrindod, LD1 6DF on Wednesday 17th July from 10.00-3.30, to book contact the Palliative Care team using the contact details below. If you would like a copy of the Advance Care Plan for yourself or someone you know, visit the PTHB Palliative Care – My Life My Wishes website, call the palliative care team on 01686 623558 or e-mail charity.garnett@nhw.wales.uk

Mandy Dean- Credu, Charity Garnett-Palliative Care Team & Kathryn Jarvis-Credu, Advance Care Champions. 

Proposed Changes to GP Surgery Cemmaes Road / Bro Dyfi - Third Sector Response

Meeting for Third Sector,13.00-15.00 Thursday 21^st March 2019,CAMAD offices, Forge Road, Machynlleth

Present

Adrian Osbourne PTHB (AO) Jayne Lawrence PTHB-Primary Care (JL) Sioned Jones Pritchard PAVO (SJP) Jen Hawkins PAVO (JH) Sue Newham PAVO (SN) Linda Hayward CAMAD (LH) Mandy Dean CREDU (MD) Mike Williams Town Councillor & Trustee for CAMAD (MW)

The main issues raised as concerns for third sector organisations and community groups were, Community Transport, Prescription Services, Triage & Appointments, Supporting Carers.

Time was given at the end of the meeting for additional anonymous feedback.

Community Transport

Community transport has been put under a strain with increased journeys from the villages to Mach due to the current reduced surgery hours. CAMAD is affected due to transport requests with an increase in demand. Most families have 1-2 cars however doesn’t always mean that the person who needs to attend the surgery has access to a transport. The taxi card scheme helps but is not a solution, providing £50 worth of support, LH advised that a one way taxi journey from her village to Mach costs £15. MW raised the question, “How do we ensure that people who do not otherwise have access to transport, out in the sticks, how can we help them to have access to services?” With funding to community transport cut what additional steps can be taken to support people with transport?

CAMAD Volunteer Drivers Scheme

Prescription Services

Concerns were raised about the meeting of prescription needs, meeting the demands of monthly and weekly repeat prescription requirements. This places additional demands on the already overstretched community transport schemes in place. There was a concern from MD about increased distances to pick up prescriptions and the extra stress that this placed on carers. Problems with community transport and prescriptions are evident with notice required for Dial-A-Ride services and infrequent public transport. Dial-A-Ride are also committed to providing transport for people to go to HAFAL Crossroads, which means they are only available between the hours of 11.00-2.00 with the rest of the time spent escorting people to and from HAFAL.  A general question was raised about whether the PTHB could employ someone in a prescription delivery service with the suggestion from SN that the PTHB invest in a pharmacy van. AO responded that there were issues around safety regulations and governance of prescription delivery services and that the PTHB had identified transport and prescription services as issues and were looking at what the best potential solution is to support these services.

Triage and Appointments

MD highlighted the difficulties for carers flagged by the changes to the surgery and the differences in the day to day running of the surgery. She pointed out the importance of caring for the carers, the difficulties in being able to see a specific GP and the issue raised with the current triage arrangements. It’s important for some patients to be able to see a specific doctor which helps with continuity of care and understanding past case histories. People are having difficulties finding respite care, to travel to the surgery to see someone who is not familiar with their case history, therefore the allocated time with a doctor is taken up with explaining often complex case histories, rather than current concerns, locums are often not keen to issue repeat prescriptions so people are often simply just giving up on appointments, rather than accessing the services they need. LH added that it’s difficult to get an appointment at all at Cemmaes Road with no appointments available at all at times.

JL explained that recruiting GPs to rural areas is an issue nationally. Services at Cemmaes Rd have been affected with the departure of Dr King, continuity of care with a consolidation of services with young, enthusiastic and committed partners. The fundamental issue is that there are not enough doctors to cover two sites and that dispensing services cannot be provided if a GP is not on site.

Concerns were raised about appointment times in Mach, if a patient is late to an appointment in Mach their appointment is cancelled whereas in Cemmaes Rd there’s more leeway. It’s not always easy for carers to get to appointments on time due to circumstances beyond their control and very often making the appointments with arrangements for respite care, transport etc can be difficult. JL replied that this could be rectified with a simple change to the appointment software settings. LH raised an additional concern about appointments and asked, “What’s the focused plan for when everyday services transfer to the existing surgery, until the new hospital is revamped? If everyone from the village has to make an appointment how will that affect availability of appointments,”

JL responded that triage is the way to reduce appointment times and added that it’s not uncommon to wait up to eight weeks for an appointment with a named GP nationally. MD and LH pointed out that there’s a problem with triage services in Mach it’s overly complicated and people are simply giving up rather than accessing necessary services. SJP suggested that it would be a good idea to educate people about triage services about what, why, how and who and that this would help people to understand the changes. AO added that a series of training events to improve triage services is planned with a rolling training programme.

AO continued to outline a primary care model, with a dedicated team of specialist support services currently being implemented in Ystradgynlais, which is a model that could also work with the Dyfi Valley services. This would be designed closely in consultation with local partner organisations. MW highlighted the importance of explaining to “older people why the nature of the service has changed and why it will continue to change over the years to come,” in his opinion this is “absolutely vital,”

Adrian Osbourne explains the primary care model.

Supporting Carers.

MD raised concerns about the added strain on Credu, with carers having to travel further to access services and the extra related issues around respite, transport, prescription services and continuity of care. She highlighted the following issues, “How do we take a community based approach to supporting carers. How do we make services more supportive for carers?” She suggested a bigger picture, public health approach and pointed out that “carers provide a vital service in the community, how do we support them as much as possible? The current changes will have a disproportionate impact on the health of carers.”

Anonymous Contributions

Serious concerns were raised about accessing prescriptions with people being unable to access the medication that they need. People with repeat prescriptions are not getting their medication. There’s a safety issue with people skipping meds, there’s a major concern that something serious might happen and it was felt that this issue had reached crisis point. People are aware that the doctors are under pressure and at capacity but it was felt that this situation is not being managed well.

Another issue around reception services was raised with receptionists being perceived as rude and unhelpful when people need advice and help.

It was made clear that none of the above comments were intended to attack but are genuine concerns. From the outside looking in, people are struggling.

Living Well with Dementia

Powys Dementia Network event - Brecon 2019

By Jen Hawkins & Jackie Newey - Health & Wellbeing / Mental Health Information Officers

On Wednesday 20 February we attended the latest Powys Dementia Network event at the Elim Church in Brecon. It was organised by our colleague Sue Newham, Engagement Officer in the team, and attended by a huge variety of organisations and individuals. These included Community Psychiatric Nurses from the Brecon Community Mental Health team, the Macular Society, Mid & West Wales Fire Service and Care & Repair Powys to name but a few.

We will try to capture some of the spirit and information from the day below, but if you would like to find out more and / or attend future events then please get in touch - further details at the end of the post. The last Network event was also captured for the blog in Powys Dementia Network event Spring 2018.

On the left Gill Garner from Dementia Matters in Powys

Overview - Heather Wenban, Dementia Lead Nurse, Powys Teaching Health Board

Heather emphasised the importance of continuing to raise the profile of dementia as we have been doing. It is high on the Welsh Government agenda with increasing numbers of people living with dementia as the population ages. She reminded us of the 6 pledges in the Powys Dementia Plan, and also highlighted the significance of working collaboratively with Powys County Council and the Third Sector to achieve the best possible outcomes for people living with dementia.

There have already been many achievements in Powys, including the introduction of the Butterfly Scheme on hospital wards, a rolling programme of dementia awareness training for health board and care home staff, and specialised RITA (Reminiscence Interactive Therapies and Activities) training too.

Heather noted the huge focus on housing in the new Welsh Government Dementia Action Plan for Wales. She is keen to share best practice with colleagues and work towards the goal of ensuring people can live well at home for as long as possible.

Suggestions from Network attendees

Making our communities and housing dementia friendly - Steve Huxton from the office of the Older People’s Commissioner

Steve began by addressing the discrimination and stereotyping that many older people living in Wales face on a daily basis. He said that older people need to feel valued and respected, to lead healthy active lives, to have their voices heard and be acknowledged as “experts by experience” in building communities for the future.

He is pleased to see the rise of dementia friendly communities in Wales, which can make transformative changes for people living with dementia, but recognised that there is a spin-off for communities which become better for all of us as a result.

Whether housing is provided by housing associations, the local authority or Third Sector organisations it is key that important questions are addressed such as - can people access transport, socialise with friends or enjoy green spaces? Steve believed that no one sector can do all that is required - it is important to look at innovative but practical solutions to meet the needs of the over 55,000 people who will be living with dementia in Wales in just the next two years. Housing is critical in all aspects of our lives - and creating warm, safe and accessible housing that allows people to live independently for longer reduces the impacts on stretched public sector services as well as improving individuals’ lives. It’s essential to recognise the importance of housing as more than just accommodation, it’s where our days begin and end, where each daily journey starts, it’s the heart of our world that allows us to live the lives we want to lead. We need to move away from theoretical practice and implement something that can make a big difference to people’s lives, creating a Wales that everyone is happy to grow old in.

Understanding housing support needs - Terry Flynn, Powys County Council

Terry is both a team leader for the council’s housing strategy and also a pensioner! After acknowledging the changing demographics of Powys whereby younger people move away for work and education whilst retirees choose to settle here in later years, Terry focused on two specific areas of his work: the bricks and mortar, and housing support needs.

The old sheltered housing model of the 60s and 70s is not fit for purpose in this day and age. Council and housing association stock is being reviewed and refurbished where appropriate to suit the needs of today’s ageing population. He was shocked to discover that 30% of accommodation originally designated for older people was no longer suitable, for example, not accessible.

Terry went on to describe a new approach called Extra Care. Working with the health board and housing associations in Powys some of the care homes are being replaced by a different kind of provision. An example of this is Llys Glan Yr Afon in Newtown. Here people can live independently in their own homes but be reassured that extra help and support is available throughout the year. Similar projects are being developed in Ystradgynlais, Welshpool and eventually Brecon.

Terry championed the “unsung service” of Housing Support Needs, who in conjunction with voluntary sector agencies work for one purpose - to ensure people can live independently in their own homes, “to make sure they are on an even keel.”

Approaching dementia differently - Sam Bolam, CEO Dementia Matters in Powys, with Frances Isaacs and Gill Garner

Sam asked us all to think if there is a different way of doing things when working to improve the lives of people living with dementia. “We need to have a beginner’s mind and look at how we can constantly improve and change what we’re doing. It is time for a dementia revolution.”‘When we pause, allow a gap and breathe deeply, we can experience instant refreshment. Suddenly, we slow down, and there's the world,’ Pema Chodron

Image courtesy of Tania Van der Berghen - Pixabay

Sam highlighted the need for change in how we approach supporting people with dementia. It’s not acceptable to just adopt a technical approach, but to recognise and adopt a person centered approach, changing from ‘what matters,’ to ‘you matter.’’ Considering person centered approaches like colour coded tarmac to support people in their daily journeys to and from their homes. Sam showed some stereotypical images of people with dementia and challenged the preconceived view held by many, she called for a dementia revolution, looking at  supporting the whole human.

There followed a conversation between Frances (who lives with dementia) and Gill (who cared for her father who lived with dementia) about some of the difficulties they have and do face and strategies they have used. Frances described, very entertainingly, how she once found herself in a broom cupboard instead of a toilet, and her “Psycho” experience when trying to extricate herself from a steamy shower. But, she said, “there is a life I had never imagined between diagnosis and before I go down the pan.” She went on to describe some of her most rewarding experiences as a volunteer with Dementia Matters in Powys, her love of the open air, and the fun times at Brecon’s Meeting Centre. Frances also impressed upon us that “it is important that you do the things that you love, that are you.”

Information sessions

Finding out about new activities in local areas for people living with dementia - Jenny Hall / PAVO

Watch out for a separate blog post about this recent research project.

Alzheimers’ Society’s New Deal on dementia 2017 - 22, and it’s new service model, Dementia Connect - Kerry Phelps

Kerry Phelps introduced the Alzheimer's Society as the leading support charity for people with Alzheimer's. As an organisation they’re increasing their reach irrespective of circumstances and engaging  as many as 1000 people in their consultation processes. She introduced their new service ’Dementia Connect,’ a staged transitional process with five different tiers.

Dementia Connect was trialled in the Pennines, then Birmingham and is now being rolled out in Wales as an early adopter model. The programme followers a befriending model with a dementia support worker assigned to support people with their dementia journey from diagnosis, through to end of life. In Powys Anne Clark is the point of reference for South Powys, whilst  Alvine Stewart has been newly appointed as the point of reference for North Powys, both posts offer 28 hours of support a week and are currently based in Talgarth.

The first point of access to the new service is by telephone call to a professional support hub, staffed by trained dementia workers, where each caller has the option to talk to a Welsh speaking support worker should they require it. Most people are able to access support and receive the support and help they need with triage and generalised support. However 70% of people whose queries cannot be dealt with there and then are escalated to the next level of tier 2 support.

Tier 2 support workers offer one to one support in the home with commissioned care plans. After the Tier 2 support has finished a KIT, ‘Keeping In Touch,’ support worker will proactively be in contact  six months after the cessation of support to monitor progress and assess whether further support is required. This tiering of service is designed to prevent ‘slippage,’ of people falling through the net and not accessing the support they need.

Access to the service is possible via several pathways. The online referral portal is popular with 90% of current referrals from HSC professionals. Side by Side is a similar model to the Befriending model with the capacity to refer people to the service.  Dementia Connect is slowly building momentum in Wales with 30 callers since January to the Welsh speaking support line. There is a wealth of information online with 100 factsheets on the website that anyone can easily access Publications and Factsheets Another useful service provided as part of Dementia Connect is an online talking point forum, lead by people with dementia and their carers, putting people at the heart of the service and helping people to truly connect, sharing support through lived experience, Talking Point - Online Community

Gill Garner & Frances Isaacs facilitated a third workshop - Ambitions in later life.

Questions and issues session

The afternoon session gave everybody attending the conference the chance to share their views and opinions about the network and how we shape and develop it moving forward. Sitting in a circle gave a real sense of coming together, connecting and sharing, rather than a “contribute from the floor, more formal feedback” session. The session began by asking what is the purpose of the network? How do we drive it forward? How do people have their needs met and what do we focus on next?

The consensus of opinion was that the service users are our priority and as such they should be more proactively involved in the network, giving us the insight and opportunity to take more purposeful action on specific services. It was suggested that a pre-meeting consultation could be held with a dementia steering group to determine what our focus should be. There was also a felt need to forge stronger, valuable links with other groups working towards a common goal such as the Alzheimer’s Focus on Dementia groups.  

To actively engage people with dementia and to be led by their needs and requirements was commonly felt to the best way forward, considering how we actively engage communities, focussing on tangible issues that make a real difference on a daily basis. Recognising that we all need a plan for ageing, asking ‘Are you OK? Can I help,’ are questions that can make a real difference to people’s lives.

Trish Buchan, trustee for Powys Teaching Health Board, summarised the day by saying that ‘Today is a giant step, we have moved forward and come a long way.' PAVO’s Engagement Officer Sue Newham agreed and added, ‘big picture thinking starts with lots and lots of steps to get there,’ Lets see what else we can do to make a real difference to people’s lives and change what Frances Isaacs, an attendee living with dementia, calls ‘pyschobabble,’ to productive babble.

To learn more about PAVO's dementia mapping please view our short YouTube video
Dementia Mapping