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.  

'Good Grief,' A new Powys bereavement support service.

People living in Mid & North Powys are now able to access a new bereavement support service thanks to Mid & North Powys Mind. We met Mary Griffiths, Development Manager for Mid & North Powys Mind and asked her to tell us more about the service.

What were the reasons for starting a bereavement support service? 

Mid & North Powys Mind were approached by people living in our community, who had previously and very successfully, delivered bereavement support, who wanted to continue to do so under the Mind umbrella.  They recognised the increased need for bereavement support because of the COVID pandemic and the need for this to be provided in a person centred way. Mid & North Powys Mind didn’t want our community to miss out on their collective 70 years of experience and we have been working hard together, over the latter half of 2021, to set up the systems and processes needed to support the service.  We are very proud to be working with a highly skilled and dedicated group of volunteers, whose passion is the wellbeing of bereaved children, young people and adults of mid and north Powys. 

What do you think the benefits of bereavement support are? 

There are many theories on why we grieve, and the many unique and different ways in which a bereavement can affect us. Research on the various grief processes has produced models to illustrate the many different ways in which people move forward from a bereavement.  There is no right or wrong way – just your way.  Bereavement support gives people, including children and young people, the opportunity to talk in confidence to someone experienced in listening to people in distress.  Some people find it a relief to talk to a stranger who can provide a safe non- judgmental environment in which to express and explore their feelings, thoughts and memories.  Someone who can explain some of the things other bereaved people  have found helpful when trying to understand and cope with their grief.   People will often say that after a bereavement they were able to talk about the death to their family and friends, but as time passed they felt they did not want to 'burden' them for fear of upsetting them.  Support can help you to feel ready to take small steps to move forward and find ways to take the memories of the person you cared for. with you.

Photo by Priscilla Du Preez on Unsplash

In what ways does bereavement support help our mental wellbeing?

The death of a loved one is something that everyone experiences at some time.  Just because you are struggling with bereavement, doesn’t mean you have a mental health problem, but it does mean you are more likely to develop one, if you don’t reach out for help and support.  Some people experience sleep disturbance, loss of appetite and energy, generally feeling low.  Feelings of isolation are experienced, particularly when support from family, friends and work colleagues begins to disappear. Grieving is not an illness but unless it is allowed to run its course, it may bring risks to physical and mental health.

Research into the effects of a bereavement on children and young people has shown  that a bereavement can have a profound effect on their mental health. Parents and teachers report the negative changes they sometimes see in the child's or young person's behaviour and in their school work.  Sometimes they struggle to express how they feel and think in words and so bereavement support, particularly for young children, can help them to express themselves through play or creative work

What support is available as part of the service?

Free support is available on a one to one basis with one of highly trained and experienced Bereavement Supporters.  Training includes over 30 hours of induction training on bereavement, additional safeguarding & mental health training, regular clinical supervisions and on-going continuing professional development.  Our team of 11 volunteers between them have over 70 years of experience supporting people of all ages with bereavement. There is no limit on the number of sessions, but we find that an average of six sessions is enough to help people get back on track.  We also have an on-going bereavement support group called ‘Good Grief’ (over zoom), where you can meet others currently struggling with similar things. 

Photo by Christin Hume on Unsplash

Is there any criteria for the bereavement?

You are welcome to get in touch with us if the bereavement was a long time ago or if it was very recent - whenever feels right for you.  It could be that you want to talk about one bereavement or the feelings you are experiencing because you have lost several loved ones from your life.  It could be about the death of a person, a pregnancy, or pet you are struggling with, or even pre-bereavement.  

Who can access the service and how do they do this? 

Anyone can access Mid & North Powys Mind’s Bereavement Support Service, from ages 4 and above, as long as you live in mid or north Powys.  Tel: 01597 824411 or email: martin@mnpmind.org.uk

There isn’t a one size fits all approach to grief or bereavement, how does your service meet the unique needs of each individual? 

The range of bereavement experiences with which people seek support reflects death in all circumstances, including violent and untimely death, suicide, drug or alcohol abuse.  Some bereavements are particularly traumatic and sudden which can result in the bereaved person feeling stigmatised, feeling shame and guilt, isolation, rejection.  The service delivers one to one support, therefore Bereavement Supporters are able to tailor their approach to uniquely match the needs of each individual. 

Some people may think that the best way to cope with grief is to have a stiff upper lip, what are your thoughts on this?

Many Western societies have a tendency to believe that showing emotion is a character weakness when it is simply a normal human response to loss. If you have not experienced a bereavement of someone you cared about, there can be a belief that grief is something you can easily get over easily and quickly.  Sometimes sheer determination will get you through but everyone needs a little help sometimes and there is absolutely no shame in asking for that help.  If you are struggling with grief, do contact us.  Many people are surprised by how much better they feel with the opportunity to talk to someone.

Is there any advice you would give to someone who isn’t sure about coming for support? 

Because each person's experience of grief is unique it can help you to talk to someone who is non-judgmental, and who can offer you the opportunity to begin to understand your grief and work with you to help you find ideas on what can help.

Some people find that having just one session is all they need to help themselves. There is no expectation that you may need more than one session.

Do you work closely with any other services in Powys or signpost to organisations who might also be able to help?

Yes absolutely.  That is an integral part of what we do. We want people to get the best help possible and by working together and signposting to other third sector organisations, depending on the needs of the person, is the best way to do this. Bereavement Supporters also have access to a wide range of wellbeing and mental health support, available through ‘Mid & North Powys Mind.’

Are there any barriers that might prevent people from accessing your support and how do you work to overcome those?

Coming forward and asking for help is often the hardest thing.  You are welcome to call us and talk it through, there is no obligation and the service is entirely confidential.  

We also deliver informative talks about bereavement for local groups across Montgomeryshire, so if you are interested in this, do get in touch. 

Are there particular issues which arise in rural areas like Powys with bereavement support?

Powys is such a rural County and this can make it hard for people to access services, for all sorts of different reasons.   Being physically isolated from family and friends can also cause feelings of isolation just when support is most needed. That is why we offer bereavement support face to face in people's homes, a neutral venue, over the phone or zoom, whatever suits the needs of the person.  Support can also be delivered during the day or evening. 

What impact do you think COVID has had on bereavement support services?

Much support has moved to on-line only delivery because of COVID, but possible future lockdowns permitting, we will deliver support in the best way to suit the needs of the person.  Be that on zoom, face to face or by phone. 

Many people haven’t been able to grieve in the usual way, what do you think the effects of this are? 

Many people have been affected by bereavement during the pandemic and have found it very difficult to access timely bereavement support in our area.  The normal bereavement process of coming to terms with a death, has been made much more difficult by fewer opportunities to visit loved ones; both before and after death.  Feelings of guilt and anger can be common reactions to grief, particularly when your experience of a bereavement has been made even more difficult as a result of the social distancing restrictions placed on people. Many of the things that help are still limited - spending time with loved ones and returning to social and physical activities.

What three top tips would you offer to support someone with grief?

Friends, family, work colleagues, school friends may want to help you but they don't know how.  You can help by explaining how they can support you.  Perhaps you may want them just to listen to how you are feeling, or share memories of the person who has died with them.  Birthdays, anniversaries and holidays can be difficult times.  Talking to friends or family in advance will help you to plan in advance how you want to spend the day.

Grieving cannot be hurried and so try to be kind to yourself by eating well, and if your sleep is disturbed, try to give yourself time to rest each day.  Be kind to yourself.

Ask for help if you need it.  If you are struggling with your feelings or thoughts because of a bereavement, you can seek support from either your G.P., or from an organisation which can offer you bereavement support, such as ‘Mid and North Powys Mind.’

Photo by Randalyn Hill on Unsplash

Dying Matters - Being in a Good Place to Die

Dying Matters week this year is the week beginning the 10th May. The focus of the week this year is ‘being in a good place to die,’ Many of us focus on the quality of our lives but how we die and end our lives is equally important. Sarah Wheeler tells us more about the steps we’re taking in Powys to ensure that people living in our communities are in a good place to die.    

Sarah Wheeler - Macmillan Lead Nurse End of Life Care Planning

What brought you to work in the field of palliative care?

I have been a nurse for 34 years and enjoyed my career latterly in Birmingham working as a Colorectal Specialist Nurse in a hospital and community setting. Within this role I was often privileged to support patients and families at the end of their lives, developing a passion for end of life care. In 2005, my family and I decided to move to beautiful Powys and I joined PTHB team as a Macmillan Palliative Care Clinical Nurse Specialist and have enjoyed being part of a supportive rural community in Powys.

Tell us more about your role as Macmillan Lead Nurse for End of Life Care Planning with the PTHB?

My role is to work within national and local end of life guidance, to ensure best care and support in end of life care for all adults along with partners within Health, Social Care and Voluntary sector organisations. I also enable and empower health and social care staff to deliver best practice in end of life care, educating and training staff improve co-ordination of end of life care.

An important part of my role is to ensure that every adult in Powys has the opportunity to talk and share their future care wishes voluntarily with family, friends, and health & social care professionals.  We know it is important to help you and those people close to you to understand what you feel is important for your future care. This is known as Advance Care Planning (ACP) and ensures that your voice and opinions continue to be heard, even if you are unable to speak for yourself. ACP can help you live your life to the full with peace of mind that your future care wishes have been talked about and shared.

ACP Lauch 2019

Tell us more about Advance Care Planning and how it started ?

In 2019, as part of the Powys Specialist Palliative Care Team we launched the PTHB "My Life, My Wishes" Advance Care Plan documentation following extensive key stakeholder and public engagement.

“ACP is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future care”.

In Powys, this ensures honest conversations, informed choices, with the aim of involving family and carers to allow for seamless care provision at end of life or if you were unable to speak for yourself: What is ACP?

Are there particular issues which arise with end of life care in rural areas like Powys?

ACP in rural communities such as Powys face additional challenges, as our local residences are often far from hospitals and loved ones, making planning ahead especially important to ensure quality palliative and end of life care or clear decision making within a crisis conversation. Although these are often seen as difficult conversations, evidence suggests that ACP is more accessible and less threatening in rural areas when these conversations are held with local people who are a trusted and part of the community in Powys. Evidence also suggests that when loves ones are able to make wishes and preferences happen it can be very comforting and helps in loss and grief.

Bevan Commission exemplar

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

With these challenges in mind, I have now become a Bevan Commission Exemplar following completion of a project educating key partners in PTHB, Powys County Council and Powys Association of Voluntary Organisations (PAVO); whose members are now Powys ACP Champions, and have the knowledge, skills and confidence to support and advise on informal and formal ACP within their community of Powys. ACP opportunities arise through their roles, their established local community networks and their personal networks.

Through collaboration with health, social care and local voluntary organisations ACP champions empower and enable ACP in their communities in rural Powys, encouraging open conversation and using the PTHB My Life, My Wishes ACP document and Information guidance. www.pthb.nhs.wales/about-us/programmes/my-life-my-wishes

What are the benefits of My Life My Wishes?

To date we have educated 220 ACP Champions in a variety of health and social care and voluntary settings, and My Life, My Wishes ACP document continues to support open conversations, to write and share wishes in advance. We continue to support Powys health and social care professionals to respect future preferences, values and wishes that matter to the person in the community we care for.

What are your hopes for the future of palliative care in Powys?

Through my role, my hope is to continue to nurture and grow an ACP movement in Powys with a rolling programme of public awareness of ACP, utilising the support of the local Powys ACP champions and acknowledging them as a huge community asset. Awareness campaigns such as CompassionateCymru/Dying Matters Awareness week, Death Cafés and Departure Lounge will support breaking the taboo of talking about death and dying within local communities in Powys. When the Covid-19 crisis hit us in 2020 it changed the whole landscape of the death and dying conversation and brought serious illness conversations and ACP to the forefront of our community’s thoughts. 

What does being in a good place to die look like in Powys?

Dying Matters Awareness week 10^th – 16^th May 2021 focuses on the importance of being in a good place to die – we want people of all ages to be in good place physically, emotionally and with the right support in place – getting there means having important conversations, taking careful decisions, thinking, talking and planning for it.

Let’s grasp the opportunity to promote and support future care planning with community networks that make a difference at the heart of the community in Powys!

In a good place to die.

If you could change one thing about the way we approach death and dying what would it be?

If I could change one thing about the way we approach death and dying is that it would be normal for us all to have a future care and death plan in place, just as it is now the normal to have a birth plan in place.

ACP remains more effective when introduced to our whole community in Powys, even before a person becomes unwell, or unable to speak for themselves or if experiences an acute crisis. “I didn’t want that..”

I hope through open conversations about death & dying we can to unleash the concept of compassion, care and support within the local rural community for those with the greatest needs.

If you had one top tip, or piece of advice about being in a good place to die what would it be?

My tip is Advance/future Care Planning is for everyone and “it is never too late to talk about your future care wishes.”

www.pthb.nhs.wales/about-us/programmes/my-life-my-wishes

“it is never too late to talk about your future care wishes.”

Our thanks to Sarah for taking the time to let us know about the steps in place to support death and dying in Powys. If you'd like to find out more please contact Sarah Wheeler at the health board Sarah.J.Wheeler@wales.nhs.uk

To read more about bereavement support in Powys please see our PAVO Mental Health Blog Bereavement Support in Powys