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.

Why Menopause Matters.

Until recently Menopause has been one of those taboo subjects that we simply do not talk about. Something that is hushed up or brushed under the carpet. Culturally we don’t have a history of discussing menopause openly but that is changing. Menopause s now included in school curriculums and in October 2021 a a bill was introduced in the House of Commons to make workplaces menopause friendly places (Menopause Support and Services Bill). As with any change it can take time to be fully embedded and accepted in our culture, and for some talking about this stage of life can feel unnatural or uncomfortable. 

Definition

Put simply menopause is a stage of life experienced by women, trans and non binary people. It’s directly connected to hormone levels and the effect of these hormone levels on a person’s menstrual cycle. 

Stages 

Menopause is the stage where periods have stopped completely. There are several stages prior to this that many people call menopause, but are separate stages in their own right, with their own definitions, symptoms and effects.

Pre-Menopause is the stage in life where oestrogen levels are at a normal level and menstruation occurs regularly. For most people this stage of life occurs naturally between the ages of 13-45, regular menstruation can begin earlier than this and continue for longer. 

Peri-menopause begins when hormone levels begin to fluctuate and periods start to become irregular. This occurs for many people in their mid to late forties but can occur much earlier, or begin later in life for some. 

Officially menopause begins at the time of the final menstrual bleed, with a person classed as fully menopausal when periods have ceased for a full year over the age of fifty and for two full years before the age of fifty. Post-menopause is the period of time after the cessation of menstruation. Menopause commonly occurs for most people between the ages of 45-55 but at least one in a hundred people experience menopause before the age of 40, 1 in 20 women will experience menopause between the ages of 41-45. Trans men, people who are non binary, people who have surgical interventions such as a hysterectomy, and those undergoing hormonal treatments, can also experience an early menopause. 

Symptoms

Approximately 80% of women, trans and non binary people experiencing peri-menopause notice the effect of decreasing hormones in their lives and 20% experience severe symptoms* Many people associate hot flushes, night sweats, weight gain and low mood with menopause but there are up to 66 known symptoms commonly associated with peri-menopause and menopause. Lesser known symptoms include dry eyes, problems with driving, joint pain and itchy skin. A combination of several symptoms can have a detrimental effect on someone’s physical, psychological and emotional health and wellbeing. Raising awareness of the symptoms associated with menopause can help people to understand and recognise them and to understand the effects on their life. 

The Stats!

Women aged 50+ are the fastest growing segment of the UK workforce, equating to approximately  1 in 6 working women in 2022, representing almost half of the workforce. Worryingly 30% of women consider leaving work because of their menopause symptoms, 1 in 10 women leave work and 1 in 5 will not apply for promotion* 

 

Support

With many more people working and experiencing menopause there is a greater demand on our health services for support. The British Medical association published a report in 2020, Challenging the culture on menopause for working doctors which found that many General Practitioners do not have the resources or support they need to support people through menopause. This is due to the fact that there is a lack of education and training for UK doctors with 41% of University courses for GPs offering no mandatory training about menopause*, where training is included it is not deemed to be comprehensive. Currently in the UK there are only 143 menopause specialists. Carolyn Harris, MP for Swansea East is campaigning for all GPs to receive comprehensive training about the menopause, helping to ensure people seeking support have their needs met effectively. 

Raising Awareness. 

Whilst we might look to the medical profession for support there are steps we can all take to support people through menopause. It’s important to acknowledge that menopause is a different experience for each person. Recognising the impact of menopause on someone’s life and the fact that menopause has an impact on all of us, not just the person going through this stage of life, is helpful. Understanding why people we work with might not seem to be their usual self, being aware of additional pressures that can exacerbate symptoms such as workplace stress, caring for older relatives and teenage dependents. The world can feel like a less manageable, overwhelming place for those without support, having a negative impact on confidence and self esteem.

Things we can actively do to support people are:

• Be able to offer support. Signpost people to as much help, information and support as possible and encourage positive conversations with GPs, going in with an informed opinion from a position of strength. 

• Find out where your nearest Menopause Cafe is and go along.

• Ask your HR / Internal Services manager for your workplace Menopause policy. What support is in place to make your organisation menopause friendly?

• Talk openly about menopause, help to raise awareness and debunk myth and stigma.

• Find out more about menopause, there is lots of useful information available about nutrition, exercise and support networks that can be beneficial. Please also be aware of commercial enterprises branded as support and get advice from accredited and professionally recognised sources. A list of recommended resources can be found below. 

Useful Resources.

• The Daisy Network

• The Balance Clinic - Louise Newsome

• Menopause Cafes.

• British Menopause Society.

• NHS Menopause Advice

• Fair Treatment for the Women of Wales.

• Menopause Matters.

• NICE Guidelines - Management of the Menopause. 

Thanks to Jayne Woodman and The Menopause Team for their comprehensive training, 'Menopause Awareness," and "Menopause Awareness for Men Supporting Women," Stats included are thanks to the training and useful resources provided.

Images thanks to Pixabay.

A Balanced Approach to Living Well in Powys.

Phoenix Mindful Living

learning to live with ease.

We were really excited to meet up with Nikki Thomas-Roberts who told us all about the amazing Balance Programme, currently being offered to unpaid carers and volunteers in Powys. The next programme starts on the 5th August, Nikki tells us all about the benefits and what's involved below.

 Where did the idea for the Balance Programme come from? 

Powys Care Academy and Powys Council commissioned Phoenix Mindful Living, a company run by Nikki Thomas-Roberts to undertake a scope to find out what we could do to enhance support to Carers and Volunteers living in Powys. The Balance Programme was designed to meet the needs of Carers and Volunteers based on engagement work and feedback undertaken by PAVO, CREDU and Powys Council. The programme has been trialled over the past six months and many participants have taken part. What has worked really well has been the 8 week Mindfulness Based Living Course,  one day Balance Retreat and one to one sessions to support participants with space, time, skills, resources and connection to other Carers and Volunteers in safe and friendly environments.

Nikki Thomas - Roberts

Who is delivering the sessions and what is their background? 

Nikki runs Phoenix Mindful Living. She is a Registered General Nurse, works as a Wellbeing Development Practitioner, has worked for 39 years in cancer care, Leadership and Organisational Development since starting her career in cancer care at the age of 16. Nikki was also a young carer and has a caring role for her two sons. Like her three children, Nikki is herself Dyslexic and has relentlessly looked for ways to support her emotional wellbeing and fellow NHS staff, nurses and Doctors over the past twenty years. Understanding how Compassion based mindfulness can impact and support individuals including herself, drives Nikki to teach these techniques both in the UK and the USA.

What does a typical 8 week programme involve?

The Mindfulness Based Living Course (MBLC) is generally run on MS Teams, the sessions are 2 hours long and run on a Wednesday afternoon 2.30-4.30pm or Friday mornings, 9.30-11.30 am

We can always negotiate other times, such as evenings or weekends if this works better. The course starts off with very gentle compassion based mindfulness techniques and practices, to help the participant really ‘feel’ how to be mindful. So that when it comes to weaving these skills into everyday life, they have already experienced it. Compassion practices are really important because often Carers and Volunteers give so much of themselves in their caring roles, often they can feel overwhelmed and sometimes lose the essence of themselves. Self-compassion supports individuals to not feel so isolated, to know that as a race we are connected to others and to understand why it’s important to keep ourselves in the loop of compassion as best we can. The Powys Programme creates very small groups who empathise and connect with each other in terms of the difficulties we are all facing sometimes, this in its own right, can be really helpful to participants.

Who is the programme for and who can access the service?

Initially the Balance Programme was designed with Powys Carers and Volunteers in mind. After the success of the first pilot, we have also rolled the programme out to Health Care workers too.

Balance Mindfulness Session. 

What are the benefits of attending? 

Participants will experience how to meditate, develop skills to manage their emotions and to regulate emotions more skilfully. Learning how to weave these new skills into everyday life, so that mindfulness is not something else to do, but being more present and generally being  mindful helps participants live with more ease.  Even on a short course or a one day retreat, Carers and Volunteers have left knowing more about how their mind works; what effect this has on their bodies; actions and emotions and how to soothe themselves even in moments of real difficulty. Participants have fed back to us how they feel they’ve learned to be more present and how to experience moments of contentment, ease, joy and positive emotions too.

Being aware of these positive emotions helps us balance some of the difficulties we experience in life.

In what ways has the programme supported unpaid carers?

Balance has done just that, helped Carers and Volunteers Balance their needs with the needs of others. This is still work in progress and it is our intention to grow the programme organically, which means we’re directed by what works for Carers and Volunteers. For example, we have developed a way of meeting participants where they are. Despite running retreats and sessions online, we know that there is a much greater need and to meet this challenge, so we have designed ‘ Mobile Mindfulness in The Good Karma Camper,’ which means we can come out to small communities and villages, organisations and youth groups and run short mindfulness sessions where Carers and Volunteers live, all over Powys. Our Retreats have provided a lovely space too, time to chat in a safe environment, encouraged walking meditation and a connecting over lunch. Learning skills and tools together in a fun and friendly way to support emotional health issues. The Balance Programme is not Therapy, however the practices and programme can have a therapeutic effect. Mindfulness can be used to manage many emotional health issues including Anxiety and Depression.

Supporting Emotional Health

Is there a respite support service in place to support carers to attend?

Yes there is. This is vital if we are to reach Carers and Volunteers. We can link up with Powys Council for support in supporting the cared for.  

Do you have a case study you can share with us?

Cecilia recently completed one of the 8 week programmes and really felt the benefits, here is what she had to say about her experience.

Where is the programme held? 

Over MS Teams and in person. So far we have held several sessions and  two 8 week MBLC’s on line and two Retreats at Bronllys Hospital at the Basil Webb Centre. One to one sessions can be done on line or over the phone. We are looking to set up Retreats further afield across Powys county as and when needed, to accommodate Carer and Volunteers individual needs.

Bronllys - Basil Webb Centre

When does the next programme begin and how can people book a place?

The latest online course (delivered over Microsoft Teams) begins on Wednesday 26 April, 9.30-11.30am, with further sessions, at the same time, on 3, 10, 17, 24 and 31 May, and on 7 and 14 June.

To find out more and to book your place, please contact Nikki Thomas-Roberts, of Phoenix Mindful Living, on: phoenixmindfulliving(at)gmail.com 

If you don’t have the time to attend an eight-week course, staff and volunteers working in the health and social care sector can also attend a one-off, three-hour, free Harmony and Balance Session (for up to eight participants) over Microsoft Teams. The next available dates for these are Wednesday 31 May, 1.30-4.30pm, and Wednesday 26 July, 9.30am-12.30pm.

Where can people find out more about the programme? 

Please contact phoenixmindfulliving@gmail.com or contact Nikki on 07803472316 between 6-8pm on week evenings and anytime on Saturdays.

 

Ty Gobaith / Hope House - Providing dedicated support to children and their families.

What inspired you to start your new role as Engagement Officer with Ty Gobaith / Hope House?

Having known families that have used Hope House/Ty Gobaith previously and working in local schools Hope House/Ty Gobaith has been known to me for many years.

Having read the heartbreaking story of Hope Peachy which led to the mission ‘Because no one has to face the death of a child alone’ and the hospice ‘Hope House’ that opening its doors in 1995.  The role advertised was something that grabbed my attention as it enabled me to reach out to families that may not be accessing the amazing hospice services, especially those in underrepresented communities. 

My passion for helping families and children has been with me since I left school. I spent 20 years in education specialising in ALN after my degree, during study I focussed on children and families from different communities and areas of deprivation researching the difficulties that some may face.

 I set up my own business helping children and families that require social and emotional support when I had to home-school my own daughter, who was unable to access education due to her ASD and sensory requirements. This allowed me to personally seek out the support groups and find out what support is out there, and has come in very useful in my role now. I am a people person and thrive on meeting others and being in a position to hopefully signpost them to support, and work alongside likeminded individuals.

Can you describe the type of support that Ty Gobaith / Hope House is able to provide?

Both Hospices provide a number of different types of support these include

Respite Care

Our respite service gives families a much-needed break from their daily caring routine. The number of the visits to Hope House or Tŷ Gobaith depends upon a number of factors, including the current health of the child or young person. No charge is ever made to families.

All families are invited to stay at the hospices with their sick child and they may do as much, or as little, of their care as they wish. Siblings, grandparents, aunts, uncles and close friends are all welcome. They are encouraged to make themselves at home, relax, join in activities or spend time talking to team members about any fears and concerns they may have.

Some families choose to bring their sick child to Hope House or Tŷ Gobaith while they go away for a break or spend time with healthy brothers and sisters. Arrangements can be made for friends or family members to visit the child or young person while they are staying with us, and families may contact us at any time.

Care for Young Adults

We can support a young person up to the age of 25 years when it is felt that Hope House Children's Hospices is the best choice to offer them care.

If a young adult has a longer life expectancy, we will work with the family and local adult services to help to find appropriate services for the future and will ensure that the family feel supported through transition.

Antenatal and Neonatal Support

We are able to offer support to families whose baby has been diagnosed with a complex or life-threatening condition during pregnancy, who has been born from 24 weeks with a life-threatening condition or who has sadly died.

End of Life Care and Immediate Care After Death

Our care for a child or young person at the end of their life includes symptom management and additional support for family members and carers before, during and after death.

We will do everything possible to meet the whole family's needs and wishes during this very difficult time. We are experienced in talking to families about care planning for end of life and will work with other professionals involved with the family whenever possible, if families wish.

Our immediate care after death can take place at the hospices or within your own home. We have the equipment and the skills so that families can spend time saying goodbye in their own way and in their own time.

Counselling and Bereavement Support

There are times when we all encounter difficult or painful experiences which we need to talk through with someone else. Counselling offers a safe, confidential space where you are listened to, accepted and understood. A space in which to find a way forward.

Counselling and bereavement support is available to families using Hope House and Tŷ Gobaith. It is also available to anyone living in Shropshire, Cheshire, Mid and North Wales who has been affected by the death of a baby, child or young person up to the age of 25 years when they died in any circumstances.

Our counsellors are professionally trained and offer help to children, young people, adults, couples and whole families. Our service is free and confidential and Accredited by the British Association for Counselling and Psychotherapy.

Sibling Support

Our sibling support team offer support and fun to brothers and sisters of children using Hope House or Tŷ Gobaith.

This includes age-specific activity days and outings where siblings can meet up and share concerns with others who truly understand what it is like to live with a brother or sister who has a life-threatening condition.

Who do you primarily work with, is it just children? 

Hope House offer a holistic way of looking after children, so although we look after the children whilst they are at the hospice we also offer support the whole family. This includes the services I have mentioned above. But also our key workers provide information on other services and events within the local community to help them connect to these.  

Tell us a little bit about your end of life support, what services do you provide?

End of life support at both Hospices centres around the child and the family, as well as symptom management. Everything is done to ensure the family’s needs are met, we also work alongside other professionals to ensure that planning for end of life is met with ease. Both Hospices have a family room which enables the family to stay with the child at the end of life. This also has its own kitchen and outdoor area so the family have space too. Additional support services are also there for the family such as are social worker and care team.

Does someone have to be recently bereaved to be able to access support? 

No, not at all, we all have our own time when we feel we may need support. Some may not want to access support straight after their child dies.  Everyone is different and may require support at different stages.

Can you tell us a little bit more about your snowflake suite?

The Snowflake Suite allows families to say goodbye to their children in their own time.

Families mustn’t be rushed to say goodbye, in the midst of grief families can visit the snowflake suite as often as they wish and invite others to say goodbye, with as little or as much input from our team as you wish. It’s a quiet, tranquil suite where you can say goodbye as you wish.

Who might benefit from your cuddle cots and cuddle blankets?

Any family that wishes to say goodbye to their child in their own surroundings would benefit from the cuddle cot which is suitable for babies and cuddle blankets which are for older children and young adults. Maybe they can’t access the hospice due to do travel difficulties, or for cultural reasons it may suit the child remaining at the family home.

Which areas in Powys do you cover?

We cover ALL of Powys

Powys is a large county, do you provide any practical support to help people?

We aim to provide as much practical support as possible. Also our social workers and sibling support take the children out on days out or visit them at home. Our respite care and end of life care is at the hospice itself. However, Hospice staff do attend the family home for immediate after life care. Our counselling service is accessible online or at any of our counselling rooms. Our social workers and community engagement team can also signpost to other services.

What barriers might prevent people from accessing your support and how do you work to overcome those?

Travelling to the hospice can be a huge barrier for most families. Which is why we also offer outreach support in some of our services. My role can also provide information to families about other services or funding in the area to help.

Cultural and religion, some may not think of using the hospice as it doesn’t fit with their beliefs. Hope House/ Ty Gobaith are culturally sensitive and are experienced to respect the families’ beliefs and make them feel as welcome as possible. We can offer a translator service if language is a barrier. we aim to find out what people require from Hope House/ Ty Gobaith and meet their needs. I have recently been on training in working Polish families to understand their needs and culture, which I will continue to do with any other communities.

Are there any groups of people in our communities that you feel are harder to reach than others? How are you trying to engage with them? 

Yes, as above I feel that cultural differences can be a barrier, some communities may feel that a hospice won’t be able to provide for their needs. My role is not just to go out and promote what Hope House/ Ty Gobaith does, but also ask what can we do to enable us to be more accessible for these communities? and why they aren’t accessing the support provided. Recently I have been looking at our leaflets and asking different communities what they feel they need. Counsellors that are fluent in their own language is something that is currently being looked at.

In what ways do you provide support and care for families? 

As well as the services I have included above, we also link in with other support groups that offer events, advice and networks for families. This can also help families that live in rural areas too due to the more online events taking place. It can also help connect families that may live local to each other. The social worker and my role can help families find out about organisations that can help with deal with day to day living issues that can arise, such as financial or housing difficulties.

Every family is different in their needs, are you able to tailor support to meet their needs?

Yes, we treat each family uniquely to their needs and wishes. We continue to seek information from other communities on ways we can continue to improve our services and ensure we are helping all families that require our support. My role often involves attending cultural events to meet and speak to other and be educated on what people require from Hope House/ Ty Gobaith.

Do you work closely with any other organisations or statutory services to provide support to people?

We work alongside other organisations within the community, PAVO have been fantastic at sharing the of other organisations that can help our families but also ensuring people have and full understanding of the support we can offer. We have close links with Betsi Cadwaladr, all the councils within North Wales and mid Wales including family information centres ensuring that information can be passed on at ease if a family does require our support. We also work alongside the Maternity units and have our Neo Natal Nurse attend ward runs so we can get to know families early on and enable us to build those relationships from early on.

Is there a set time frame or length of time for accessing support? 

No, the time can vary from family to family. We have families that attend our memorial services for many years after their child has died as their connection with Hope House/Ty Gobaith offers them comfort. We’ve also had grandparents accessing our bereavement counselling, years following their grandchild’s death as that was when they felt they needed the support.

What is the most important message or piece of advice you’d like to give to our communities in Powys? 

That the word hospice doesn’t necessarily just mean end of life care. We care for children with life limiting conditions, early intervention from a referral can mean that family having access to the care Hope House/ Ty Gobaith provide early on. Also anyone in the family that a child has died can access our bereavement counselling.

What’s the best way for someone to contact Ty Gobaith / Hope House and to be referred for support?

Anyone can refer to Hope House/Ty Gobaith whether it be a professional or a family member or friend. However, all we ask is the Child’s family are fully aware of the criteria and they agree to the referral

please contact care@hopehouse.org.uk or care@tygobaith.org.uk or call Hope House on 01691 671999 or Tŷ Gobaith on 01492 651900.

I am also happy to be contacted if someone wants more information on how we can reach out to families about the work of the hospice.