Wagana Aboriginal Dance, waterfalls and #PHPCI2019


It’s so quiet up here in the Blue Mountains, apart from the tropical birds and the odd strange animal noise, that I would prefer not to investigate, you would otherwise think you were isolated from the rest of the world. With our body clocks out of sync at 5am Sharon and I decided once Jed was awake we would start the day walking Leura Cascades bushwalk, prior to the conference opening ceremony.

The Cascades bushwalk is located between Leura and Katoomba and is supposedly one of the prettiest in the Blue Mountains. It certainly didn’t disappoint. We followed a gradual sloping track along a bubbling creek, more so than normal due to yesterday’s heavy rainfall.

Leura Cascades

The skyline is full of towering eucalyptus and pine trees, a sensations overload, with little bridges (we had fun on those), caves, huge overhanging rocks and lush forest fern plants.

No rain!!

We reached the cascading waterfall before climbing up to the vista point, overlooking Jamison Valley. It’s fair to say we hadn’t really took much notice of where we were in the walk so when turning a corner and faced with the most INCREDIBLE view it all got a little emotional.

Views across Jamison Valley

The photos don’t do any justice to the natural beauty and sheer size of the Blue Mountains, it literally took the breath from me and will certainly be something I’ll never forget.

A steep (again) walk back, muddy trainers were discarded and we were conference ready.

The conference Public Health Palliative Care International is held every two years and with the public health approach to palliative care movement rapidly growing around the world it gives people the opportunity to share innovation, opportunities, change and good practice. When I hastily emailed in my abstracts with an hour to the deadline I never in a million years thought I’d be given this chance to represent Mary Stevens Hospice, sharing work around diversity, inclusion and community development to international delegates.

So, we arrived at Fairmont Resort, sat with a coffee, got our delegates packs and prepared for the ‘welcoming’ ceremony.

Individual designed tote bags, handmade cockatoo badges with words from the Uluru Statement from the Heart and other conference goodies!

I mentioned in a previous blog that Leura sits on Darug and Gundungarra Country, the land of Australian First Nations people and organisers and speakers pay respects to the elders of past, present and emerging.

This made the opening ceremony rather special, with traditional dance performed by the Wagana Aborginal Dancers and a smoking ceremony with Chris Tobin that went all around the room. Audience participation was required so at one point a tutorial was given and all the women in the room had the opportunity to unite in this ancient custom. Following on from this delegates from New Zealand did the Karanga, a call out of the Maori people of New Zealand that traditionally forms a welcoming ceremony. (See video) A beautiful, emotive way to start the day.

The Karanga
Wagana Aboriginal Dancers

Plenary 1 saw Kerrie Noonan,Libby Sallnow, Allan Kellehear and Suresh Kumar reflect on the last ten years. From the first conference or ‘support group’ in 2009 to present, and how they foresee the movement growing in the next decade. There has been a major shift from community engagement to community develoment, with an increase in compassionate communities in the UK. However, the next big challenges is tackling larger population areas like our cities in civic society. Who are the leaders to grow this work, are they the innovators and courageous?

Question time! With Professor Allan Kellehear and Dr Suresh Kumar

Later this afternoon I attended a session from New Zealand’s Merryn Gott on social connections, hearing the voices of older culturally diverse people and having a sneaky premiere of her and Te Arai research groups Oscar nominated (yes, the Oscars! ) short film, Elderbird Song. I had been asked to chair a different session but determined to attend this I politely declined and I’m so glad I did!

Dawn Pegram and Mo Bilshen cryptically titled presentation ‘Ctrl Alt Delete’ raised a discussion/debate on ACP and`The Gatekeepers’ of hospices.

Lastly, our very own Jed Jerwood, spoke about his research, improving palliative and end of life care for people with severe mental illness, amplifying the voices of the marginalised, stigma people experience and the need for ‘Leaning in, not standing back’ palliative care and support.

Final slide from John, a person with lived experience.

Day one of the conference ended on a high, with a drinks reception featuring locally sourced wines, it was sooo good. We were able to spill out into the grounds, with spectacular views, chatting with people from all over the world. Another fabulous space for networking at this event. I helped with a twitter workshop during the reception, enabling others to use social media for professional purposes. Set my person up and she tweeted her first tweet, another individual added to the growing palliative care public health online community.

I have two presentations tomorrow (eek) but if this is what day one offered then I can’t wait for the rest of the week.

“The next ten years mainstream palliative care needs to become more integrated, it’s the only way to reach out.”

Dr Suresh Kumar

Exciting News!

In March 2019, I was delighted to be appointed Trustee for PCPLD Network, a position that I am extremely proud of. My hospice role of Diversity and Inclusion Lead is dedicated to improving palliative and end of life experiences for people with learning disabilities and structural vulnerable populations so both these roles complement one another.

A few years ago I never imagined being in the position I find myself in today. The challenges (I’ve had several!) and changes, innovations (usually 3am ideas) and opportunities. I remember sitting with the then Ward Manager questioning how the hospice could become more accessible for people with a learning disability and if I could ‘champion’ this area. From this initial conversation I have learnt directly from people with a learning disability, listened to their personal experiences and been determined to reshape palliative care for this community. What started as a small project has influenced and had the biggest impact on all my work to date. Despite starting an MSc in Health Research Methods I already have my PhD proposal patiently saved to my desktop, ready to seek further knowledge and understanding in this area.

Recently during a conversation with PCPLD Chair, Professor Irene Tuffrey-Wijne, she asked my thoughts about stepping into her shoes and taking on the Chair position. Speechless I asked for time to consider Irene’s proposition. I knew I couldn’t turn this opportunity down, despite imposter syndrome rearing its head!

I don’t pretend to have all the knowledge or answers. However, I do have curiosity and appreciate people for who they are. I seek a community response, exploring and discovering what matters most to people. I ensure people I work with are valued, have their own identify and work together as equal partners. I build relationships based on foundations of trust, honesty and integrity, listening to stories and reaching out to people who don’t traditionally access palliative care.

We don’t always talk about death and dying, sometimes not at all. For everyone to have equitable access to palliative care we need to talk courageously about death and dying, in ways that people understand. This includes people with a learning disability who often don’t get this opportunity.

PCPLD Network Ethos is that ‘people with a learning disability should receive coordinated support needed in living their lives to the full, until the end of their life.’

I’m extremely proud to be taking on the position as Chair of PCPLD Network from the middle of September. Please do join me in the next chapter of my journey and most importantly the next stage for the Network.

For more information about PCPLD Network visit www.pcpld.org or Twitter @PCPLDnetwork

The last few days… reflecting on #PHPCI2019

Thursday was a day of rest, well supposed to be. A 6am sunrise was on the cards as we sleepily bundled ourselves into the car for a five minute drive to Sublime Point. There I FaceTimed Fin so he too could experience the beauty and spiritualness of the Australian sunrise. ‘Yeah that’s nice mom’ was the most enthusiasm he could summon, reiterating that sometimes these things are best to experience on your own!

Sunrise at Sublime Point

We had booked into the organised trip for the mountain hop on bus and Scenic World. Scenic world boasts the worlds steepest train, a cliff glider and cable cars that take you right down into the floor of the rainforest. So what did we do? Yep, we decided not to take the tourist trails with the lovely developed walkways but instead went off the beaten track on our own trail. Lots of uneven steps, caves and waterfalls, again the Australian miles very different to the British ones! But once again wow, wow, wow! Around every corner magical scenes were to be discovered.

Walking under the waterfalls

6am Friday morning and I’m lying in bed reflecting on my time in Australia before flying home later today.

This was always going to be momentous trip, travelling and speaking at an international conference is a big thing, yet what I hadn’t anticipated was the personal journey I’ve travelled.

I nearly turned around at Birmingham airport as last minute nerves kicked in. ‘I can’t do this. Who am I kidding. How can I fly to the opposite end of the world to a conference? Who would want to hear from me anyway?’

The guilt of leaving my family, self doubt and lack of confidence niggled away in my mind throughout the flight. Even when I arrived in Sydney it was still there, tapping away inside. But in my head I thought of the patients I’d cared for, the regrets, the sense of doing something later when for some, later never comes. We encourage people to live well until they die, surely I needed to practice what I preach and seize the moment.

The conference was everything I’d hoped it to be and more. It was cathartic, refreshing and most of all welcoming. The organisers went above and beyond, pulling out all the stops for what would be the best conference I have ever attended. The Brits have a lot to learn from the Ozzies!

The Dawn Chorus closing #PHPCI2019

More than anything it made each person feel valued. I’m totally overwhelmed by the comments and feedback I’ve received. To think the work of our little Stourbridge hospice is rippling out all over the world is phenomenal.

This wouldn’t have been possible without the team at DVC

I’ve learnt to graciously accept praise, acknowledge that I’ve worked my blooming socks off and fought to get my place in this world. I often play down what I’ve done, it’s just because I’m a people person blah blah.. but actually it’s not. It’s the passion within that fires me up and makes me strive for the very best end of life care for everyone. It’s the knowledge I’ve gained from late night reading, studying and from speaking and working alongside inspirational people. It’s the desire to better myself, to share work and the love I have not only for my job but my hospice.

It can be a very isolating role, one that’s quite new within the hospice world and often not understood. That’s why I reach out, asking for advice and support from others in similar roles. This reaching out has led to joint work and the opportunity to share our work with a presentation that spoke about the highs and the lows of community development in palliative care. You see together we are stronger and can have a greater impact.

Sharon and I joined by Ian Leech from the Midlands Hospice Network.

I spent most of Wednesday in tears. Too many kind words from people who influence me from across the seas, tweets and invitations to other countries to share the voices of people I work alongside, something I’m proud and privileged to do.

I spoke to Maria Heaton, a mom who’s two children with intellectual disabilities died, with poor uncoordinated end of life care. I thanked her for sharing her story, not saying I quietly wept at the back of the room whilst listening to her and watching her husband supporting her to share their family journey. What did I get? A huge hug and she thanked me. She actually thanked me for being the voice for her children, for the adults and the parent carers, for actually doing what I do. I couldn’t respond so I just squeezed her hand and walked away, overcome with emotion.

Maria Heaton, sharing Tiarna and Tristan’s stories.

There are people in New Zealand doing similar work who sought me out.They had attended my presentation and wanted to see how we could work together from afar on research around this particular community. Feedback from the homelessness presentation spoke about the empathy, the human touch and ability to encourage people to think outside the box.

Every presentation I delivered I left feeling positive, confirmation I’m ‘on the right track’. Every presentation I attended I left feeling inspired, influenced and eager to take my learning back to the UK. I was welcomed into this new world, full of people just like me, those that take risks and as explained in a previous post, fellow renegades. It’s good to look at things differently, take small risks. These are things that need nurturing, to encourage growth, innovation and leadership in this concept of palliative care.

It has to be about community, for the privileged few that are looked after on In-Patient units it isn’t enough. Services and funding are already stretched beyond boundaries, already this year hospices in the UK have folded. What happens if this continues? We need to look at different models of care, influence and work with others and change our strategies.

So I guess this is goodbye from Australia 🇦🇺. Toasting our time with red wine in plastic cups watching the last sunset seemed apt, with the tones of a didgeridoo, developed by indigenous peoples of Australia whose culture we have learnt so much about, playing through the woods. Yet another surreal moment!


I really do feel I’ve lived every moment to the fullest whilst in Australia. I also know if I had been on my own this may have been a different story. I want to say a huge thank you to Sharon and Jed for the hysterical laughter, fabulous company, confidants and being the best house and conference mates anyone could wish for. We have had a blast and it’s been a pleasure sharing this experience with them, I’ve gained two friends for life… watch this space for future collaborative work between us!

The Brummie Three as we were known (it was too complicated to explain I’m technically not a Brummie!)

Landed back in the UK 1pm Saturday, arrived to huge hugs, kisses and flowers at Birmingham airport…the dog is still sulking at being abandoned! I’ve missed everyone so much, for now it’s cuddles and family time before throwing myself 110% head first back into work. PHPCI2021… here I come! 🇧🇪

Bedtime cuddles, it’s good to be home ❤️

The inspirers and the renegades

15th October 2019

The days are going really fast now. I can’t believe how quickly time is flying by and I really want to savour these last few days.

We’ve hired a car so it’s easier to get around, an Australian mile in the Blue Mountains feels much longer than an English mile!! So with our little car we stopped off en-route to the conference via Echo Point.

More commercialised than Leura Cascades we were greeting by thousands of school children and tourist coaches all with the same mission, to see the magnificent Three Sisters and views across Jamison Valley. This is a must visit for anyone visiting Leura or Katoomba.

Beautiful sandstone cliffs, a luscious green rainforest and the blue hue of the mountains, the view is breathtaking.I felt so small and insignificant in amidst the magnificent surroundings. A photo does not capture the striking beauty, fresh smell or the grounding feeling of calmness that overcomes your soul when faced with these views. I wish I could bottle it up to share with others back home.

The Three Sisters
Views across Jamison Valley

A quick visit and a few photos later we headed back to the Fairmont Resort for my third and final presentation. I felt more nervous about this one, once again I was sharing somebody’s story and legacy and felt far less confident than the previous day.

However, the chair Sally, a social worker from Glasgow soon put me at ease as I opened the session. 30 minutes of speaking can feel like a long time but before I knew it my time was up with the opportunity for questions.

Third and final presentation
In full flow!

What has really amazed me is the interest from across the globe. When we work in relatively small settings we plod along in our own little worlds without considering the impact or influence our work may have on others. This conference has really altered how I think and I know I’ll need some time when I’m back home to digest everything properly.

I’ve learned so much (and been told) this week about valuing ourselves and what we do needs to be celebrated. It’s okay to be different, it’s okay to think outside the box and most of all it’s okay to be a renegade (my new favourite word after listening to Kerry Noonans presentation!)

I’ve been privileged to hear from and speak with many inspirational people from across the globe. Too many people to put into one post! Lots of contacts have been made although who knew networking day after day could be so tiring?

A time to put on our glad rags we attended the Gala dinner and with free flowing Australian wine it was an opportunity not to be missed.

Ready to mingle

The weather has been extremely kind and despite temperatures falling overnight the days have been balmy and warm. This resulted in this sign being put outside in the hotel grounds….

Almost slightly disappointed I haven’t seen a snake… or a koala… or a kangaroo.
We have however saw plenty of these beautiful parakeets. Lots in fact. Like the Australian version of a pigeon!

On that note, goodnight!

Champagne, presenting and the Sexy Assassin!

Beautiful walk to start the day to the conference venue, The Fairmont Resort, up and down ridiculously quiet roads (only one car passed us-where’s rush hour?) and little winding paths around the golf course. The trees were full of blossom and with the early morning sun warm it was a pleasant stroll, not forgetting the opportunity to drool over a few houses.

Blossom trees are abundant in Leura, it seems weird to see them in full bloom in October!
It’s for sale…..

We arrived at the venue with minutes to spare ready for the first plenary session of the day. This conference is a first for me in the sense that it’s caused many a tear, not over death and dying, but over ancient customs and traditions. I also felt completely ignorant about my knowledge on the aboriginal people and the stolen children generation.

See link for more info https://australianstogether.org.au/discover/australian-history/stolen-generations:

I had the upmost honour of listening to Susan Maylan-Coombs doing the keynote presentation `The Circle of life: An Australian First Nation people perspective on life and death.’ She spoke of ancient customs and traditions of the Indigenous community on death and dying.

Susan is a natural storyteller, she spoke about the life journey and honouring ancestors in a physical or spiritual form. Susan advised the audience to look for meaning in everything, from animals to plants. To be present.

Susan Maylan-Coombs with Dr Tess Moeke-Maxwell

For the last few years I’ve been a member of the Midlands Hospice Network, remember Hospice Pride, my feathered wings?! Well, that’s us. We all work in very new and often isolating roles within our individual hospices so to have our own community to share ideas, innovate and come together on joint events is a wonderful source of support, one I really couldn’t do without.

Sharon (Birmingham St Mary’s Hospice) and I wanted to share the importance of people working in community development roles having a peer network, space and support. We were delighted to have the platform at PHPCI2019 to do this and hopefully inspire others to do similar collaborative working.

Our presentation `Hospices working closer together-collaborating as our own unique community’ started well when we were greeted with champagne by a brilliant chair, Claire Hepper and another presenter Carolyn Mandersloot, more about her later. Our presentation was well received with lots of interest. One thing I concluded was that I’m never presenting again unless the bubbles are a standard welcome!

`What a combo!’ Love this tweet and photo!

The Evans Room presenters, girl power!

The programme had been developed in a way that following our joint presentation I then spoke about my own work, with people with learning disabilities. The session `Hear my voice’ focused on the collaborative approach Mary Stevens Hospice have taken working WITH and alongside communities and I felt extremely privileged to speak on behalf of people with learning disabilities, allowing their voices to be heard.

I’m extremely overwhelmed by the volume of tweets, messages and conversations I had following the presentation. Fingers crossed the third goes as well!!

The Sexy Assassin aka Carolyn was up next. The lady who supplied champagne, apparently she does it regularly- why have a stuffy conference hey! So Carolyn is a stand up comedian, a palliative care community nurse and a restaurant owner. Put these three together and a warning that the odd F-bomb would be dropped for a winning combination that had her audience in hysterics from the start. Some light hearted relief in what can be an emotive subject. Thanks Carolyn!

Stand up comedy around death and dying! Carolyn, aka the sexy assassin or checkout chick!

Goodbye Sydney, Hello Blue Mountains

Said farewell to Sydney this morning but not before making a promise to return. The past few days have whizzed by in a slightly jet-lagged whirl, yet I feel I made the most of my stay in this beautiful, vibrant, friendly city.

Roll on a few hours and `Sharons Gang’ (aka myself, Sharon and Jed) named by tonight’s Uber driver, arrived in an extremely wet, foggy, chilly Leura. However, the locals told us they were pleased about the rain due to experiencing a drought after a dry winter.

Home for the next six nights

Leura is a beautiful national trust mountain village (even in the rain) with an array of bush walks, cliff paths and waterfalls. It is also extremely hilly!!!

It boasts a quaint High Street with small independent stalls and an annual spring fair, celebrating the start of spring, coincidently this weekend.

Spring Fair

After bravely walking up and down the stalls and buying a few keepsakes, we stopped for lunch at a tiny family run pie shop to fuel up before the conference Fringe Festival launch event. It didn’t disappoint!

Kangaroo Pie 🦘

After returning home, a quick cuppa to warm up and figuring out how to turn the central heating on we headed up to Katoomba Arts and Culture Centre, which on a clear day has a large viewing platform to admire the views. This was the venue to officially launch From the Brink: A Fringe Festival About Ageing, Dying, and Grieving, an event linked to the 6th Public Health Palliative Care International Conference that all three of us are presenting at.

It was nice to hear thanks given to the Gundungurra and Darug people and lands, with respect paid to Elders past and present. This Acknowledgement of Country gives people the opportunity to pay respects to the traditional owners of the land, in this instance it acknowledged the aboriginal people. I’m looking forward to seeing more traditional customs, ceremonies and culture at the conferences opening preliminary tomorrow.

Jed was a member of the panel discussion speaking about Arts at the End of Life, with several interesting conversations had amongst the panel and audience.

One member spoke about beauty and using flowers from funerals for art. Using Muslim cloth, often used to wrap a baby at the beginning of life and to shroud a person at the end of life, she uses flowers to dye the cloths to gift families. A simple method of rolling, tying and steaming, my photo does not do it justice or show the delicate colours dyed into the fabric from the flowers.

I thoroughly enjoyed this evening and I’d say we are in for a treat over the next week. However, there were a few things that I’m pondering over that was said.

The first being that nobody wants to die alone. Actually, some people do. That’s their choice. We may not agree with it or want it for ourselves but if that is that persons wishes then who is a bedside vigil for?

Likewise to die in hospital I felt was seen as a bad thing and that nobody wants to die in hospital. But expected deaths in a hospital can be good and some people choose hospital as a preferred place of care. No, it’s not for everyone, I certainly wouldn’t want it but then for some neither would they want to die at home, nursing home or a hospice. It’s important for people to have choice, as we can then as a community help support that decision.

After all, isn’t that why we ask, what matters most to you?

Garden of Friendship, convicts and Etta James…

Started the day with the nicest poached eggs on toast I’ve ever tasted! At 5am I was siting in a tiny cafe, raring to go yet knowing I needed to try and pace myself. Two cups of coffee later, a quick FaceTime and I had my backpack on ready to explore Sydney.

I decided to discover more of Darling Harbour and had found in amongst the usual Sea Life Centres and Madame Tussaud’s a tiny little tourist attraction, The Chinese Garden of Friendship.With a meagre $6 entry fee (around £3.20) it seemed silly not to have a look around.

Continue reading “Garden of Friendship, convicts and Etta James…”

Jet lag, cemeteries and coastal walks

Blue skies, palm trees and a first peek of Sydney

Well I arrived Down Under at 7am Thursday, what a surreal experience to be travelling alone, thousands of miles from home.

Despite only having two days in Sydney I’d planned to fill them with as much exploring and sightseeing possible. Yesterday, I’d arranged to meet an old school friend,Lora, who has lived in Sydney for the past 9 years. So straight from the plane I dropped my luggage and jumped on the tube to Bondi beach…tiredness a forgotten afterthought as excitement and the need to devour the sights of Sydney threatened all sense and reason.

The Bondi to Coogee coastal walk was the plan so off we set, catching up on one another’s news.

High school reunion on Bondi Beach! Still look the same as 20 years ago…. well maybe not!

The walk is stunning.Favoured by locals and tourists alike it offers beautiful cliff top views, world famous beaches,board walks, rock pools and lush greenery with the odd cafe along the way…gosh I sound like Trip Advisor 😂.The conservation team were out in force, tidying up shrubs and rock plants with walkers, runners, families and tourists taking the opportunity to embrace the spring sun.

Start of the walk at Bondi beach, choppy sea meant nobody was surfing!

The breathtaking views I exclaimed had an almost British-like feel to them, especially across the rugged coastline.

The main reason for this walk was to visit Waverley cemetery.Nestled on the cliff top at Bronte stand tall and proud Edwardian and Victorian monuments, overlooking the sea, a beautiful journeys end for many Australians.

Waverley Cemetery

The serenity,despite it being along the main path and walking trail, enfolds you and a grounding sense of calm almost floats on the slight coastal breeze. You could certainly pass a few hours meandering amongst the graves and gazing at the beautiful views.

A poem, Remembrance, caught my eye, the final stanza in particularly touched and resonated with me.

I use the words ‘have courage’ a lot in day to day life and courage can mean many things but have the courage to experience new things. If it’s out of your comfort zone take a deep breath and just do it! Have the courage and seize the moment!

“When I die I leave you Love and the Sea. Friendship and all the loveliness in the world. I bequeath to you. The Living. All the joy and all sorrow.Have courage. Always. And sometimes. Sometimes. Remember me.”

Expert from Remembrance by Marjorie Pizer

Lora and I had quite a conversation in the cemetery and palliative care/public health people in Australia.. keep an eye out for Lora…she has some great Community Development ideas for Sydney.

The final destination was Coogee, reaches only by climbing the steps of death. No, they aren’t really called that but I genuinely thought I was going to die walking up them! The only thing that kept me going, and actually can we all just take a moment to appreciate I hadn’t slept in 30 hours, was the promise of the best Margarita in Sydney. I’ve actually forgot the name of the bar but huge open panoramic windows overlooked Coogee beach with mellow music playing, fresh seafood cooking and an ice cold cocktail was THE best way to end an amazing first day.

Coogee Beach cocktails with a view

10 hours sleep later, yes I crashed as soon as I got back, and it’s 4am Friday morning.I’m looking out at Darling Harbour from my bed, ready and waiting to embrace the other treasures Australia has to offer.

Take care,