For many, lymphoedema is an unknown word, something that fortunately they may never have to come across.

But for those that do, it can go from being an unknown word to a daily part of their routine.

Lymphoedema is thought to affect more than 200,000 people in the UK. When you look up the definition, lymphoedema is described as a long-term condition that causes swelling in the body’s tissues. It can affect any part of the body, but usually develops in the arms or legs.

Our lymphoedema team, led by Cheryl Brown along with practitioners Annabel Sansom and Jo Vella, provide care and encourage self management to patients dealing with lymphoedema, through specialist education and treatment, allowing them to manage their condition on a daily basis.

The most common form of treatment is using multi-layer bandaging and compression garments, which provide a firm casing for the muscles to work against to aid fluid drainage and limit the build-up of lymph fluid.

Roland Monger, aged 37 from Downderry in Cornwall was one such individual who had never come across lymphoedema. “It was a word I wouldn’t have been able to spell it and certainly didn’t know what it meant.”
That was until last year Roger became affected by it following surgery to remove a cancerous tumour. He tells his story, “In 2016 I had a diagnosis of skin cancer, which was quite a large tumour in my groin. When the tumour was removed they had to take some of the lymph nodes out, this resulted in the lymph fluid not been able to drain from my body properly in my right leg.”

Fiancé Gemma Turner added “After the surgery, my fiancé had an appointment with Jo at St Luke’s to determine if he had lymphoedema and the severity of it. Lymphoedema came as a shock to me, I’m an eternal optimist and in my mind, the tumour was out and that was that, so after speaking to Jo and finding out his condition was forever, was a shock.

“I have to admit, I didn’t know what to expect before our first meeting with Jo, I’d never been to St Luke’s and I was expecting quite a depressing place. I was relieved to be completely wrong about that. We sat in the café admiring the views and spotting all the Plymouth landmarks while waiting for the appointment. Jo was lovely, we were both nervous, and she put us at ease immediately, she explained everything she was doing and gave us so much more information about the condition and how to manage it. We left feeling much more confident about the future.”
Roger adds: “I now wear a stocking which I have to come up to St Luke’s to get checked. This allows the leg to be compressed and the lymph fluid to be pushed and to exit my body correctly, so my skin stays healthy and my system work properly.

The nurses have been fantastic at giving me solutions that work with me. I know quite often some of the patients they work with are older than I am and haven’t got chunky legs like I have. They have had issues to get the stockings to fit correctly and stay up, but they don’t just stop and say put up with what you have got, they keep measuring and adjusting to find solutions.”

“In the past I have always donated to St Luke’s. To actually see where the money is going and what it is doing is really powerful. So if you have a friend or a relative that needs to come here for treatment, maybe volunteer to bring them up. There is a really nice café, great view of Plymouth and it might just help you understand where your money is going and where that support helps.”

St Luke’s lymphoedema service is provided on behalf of the NHS, 37% funded by the generous support of St Luke’s supporters. As well as their service at Turnchapel, the team run a clinic on the first Friday of every month at Tavistock Triangle Centre and every other month at Kingsbridge Hospital Triangle Centre.

Read more about Roland’s journey online via his blog: https://ididitsite.wordpress.com/

When faced with a long term health condition or disability, it is important to have a say in how your care is delivered. Choice and ensuring the care is tailored to your specific needs is paramount.

In 2014 the NHS reviewed the way healthcare costs were distributed and created personal healthcare budgets, giving everybody a voice in how their health and wellbeing needs are delivered.

It isn’t new money, but a different way of spending health funding to meet the needs of an individual explains St Luke’s clinical educator, Su Jameson “A personal health budget may be used for a range of things to meet agreed health and wellbeing outcomes. This can include therapies, personal care and equipment. What often comes as a surprise is that your care doesn’t necessarily have to be provided by a healthcare professional, it could be a relative or anyone, it is your choice.”

In response to local demand our education department are now offering courses to help and guide anyone with an approved personal healthcare budget. “Once the budget is in place, we can assist in training the carers with the skills they need to be able to care for that individual. The training can take place at home and will be bespoke to the care needs of the individual. Each course is unique, care requirements will differ from person to person, so you can’t simply roll out the same training to everybody”.

Zak Hughes, aged 21 from Yealmpton is one of the first to take advantage of St Luke’s new training service. “Personal healthcare budgets can be a bit daunting, I knew I wanted choice in my care and to become more independent, but I needed a little help.”

Mum Wendy said: “Zak has had a rare neuromuscular condition, myotubular myopathy (www.myotubulartrust.org) since birth, affecting his breathing, swallowing and mobility. For him, something as simple as opening an envelope is impossible.” Zak’s mum and dad had always been closely involved in managing his daily needs with some support from a care agency in his teenage years. Naturally, on reaching adulthood, Zak felt it was time to take things into his control, starting with employing his own team of carers.

Arriving at Zak’s home with bags of medical equipment and five medical manikins, trainers Su Jameson and Mike Thomas delivered a seven hour advanced learning practical and theory course for his six carers. “Not all of his carers came from a previous career in nursing” said Su. For Zak, our training was centred around recognising a deteriorating adult, basic life support, nasopharyngeal suctioning, medicine management and pressure area care management. This course not only gives the carers confidence to manage Zak’s needs, but also makes them feel they are fulfilling their personal and professional development.”

Attending the course were six care assistants Mel, Vicky, Faye, Honey, Steve and Jemma. “You can tell that they are professional trainers, it was so in-depth, but delivered at a level everyone could understand. It was the best training I think we’ve ever had and delivered with a sense of humour and fun which made it really memorable.”

While Zak feels that it is important for his carers to feel invested to help them maintain fulfilment in their work, it is also equally important to him that as well as being people who he has things in common with, they are also confident in delivering care of the highest quality. “I would like to say a big thank you to St Luke’s for their role in doing just that!” said Zak.

Our education department is run by a multidisciplinary team of nurses, physiotherapists and public health professionals offering external training courses to healthcare workers. They specialise in courses focussed on upskilling healthcare professionals linked to palliative and end of life, alongside providing general healthcare training. All profits from the courses are invested into our service to help deliver care to over 3,400 patients every year.

Care at home and avoiding unnecessary visits to Plymouth hospitals is a key priority says local hospice charity.

Research from Dying Matters, a national coalition which aims to help people talk more openly about dying, death and bereavement, states more than 70% of people wish to die peacefully at home. St Luke’s Hospice Plymouth care at home teams are helping to make this a reality for residents in Tavistock as they work in partnership with other healthcare professionals to put end of life care on the agenda locally.

Hospice Care Week, the annual week celebrating the work hospices do, falls between 9 – 15 October and this year the theme is ‘We are Hospice Care’, highlighting the many faces of people involved in hospice care throughout the country. From St Luke’s nurses to the healthcare providers that work alongside, Hospice Care Week is about celebrating everyone involved in providing and supporting hospice care.

St Luke’s is leading end of life care in Tavistock, working in close partnership with local GPs, Livewell Southwest district nurses, Tavistock Hospital and Brentor and Moor Compassionate Neighbours. The St Luke’s at home team provides the support to enable people to remain in the comfort of their own homes, reducing unnecessary journeys to Plymouth hospitals and ensuring that they receive the care they need in the last months, weeks and days of life.

Derek Hart is the dedicated St Luke’s specialist nurses for the Tavistock area and has been working for the local charity for the last six years. Derek can travel up to 100 miles a day visiting terminally ill patients in their homes, offering support, guidance and medical care and advice. He supports patients throughout Tavistock and the surrounding area. In the last year Derek has made 605 patient visits. Almost half of all these visits took place in rural outlying areas including Princetown, and up across to Bere Alston, Mary Tavy and Lifton. Although the majority of Derek’s patients are seen in their own homes, Derek also works closely with Livewell Southwest staff at Tavistock Hospital, local care homes and agencies and has even received funding from The Burdett Trust to facilitate end of life care at Dartmoor prison, helping to deliver symptom and pain management to prisoners with terminal illnesses.

Derek wants to ensure that wherever possible, his patients are cared for where they want to be, in a familiar setting or environment. “Many of our patients don’t want to go all the way to a Plymouth hospital. They would prefer to stay locally in their own homes or at Tavistock Hospital, which many feel can be more relaxed and not as busy as a ward in an acute hospital.”

A key aspect of the end of life care provision that St Luke’s provides in Tavistock and the surrounding area is partnership work, ensuring that patients receive the best possible end of life care. Derek says, “When facing the rural challenges of Dartmoor we have to ensure that our care is coordinated with other local healthcare professionals, with effective communication, using our resources more efficiently, to deliver patient care, but also giving a higher standard of end of life care as well.”

These challenges mean that Derek and his team have to think efficiently when visiting patients, often undertaking joint visits with other local healthcare professionals or planning to fulfil a patient’s medication needs.

Harry Lee Cutler, Livewell Southwest GP at Tavistock Hospital said, “St Luke’s is really important. We get a few palliative care patients in this hospital and they can have quite complex needs that require specialist input. St Luke’s have that extra bit of time to be able to run through their symptoms and offer advice with specialist medications to ensure that patients are comfortable and their holistic needs are met at end of their life. They can also provide this care right here in Tavistock without the need for patients to go into the unit at Turnchapel or Derriford.”

Jane Martin, Livewell Southwest Community Sister at Lifton surgery and district nurse for the Tavistock area, works alongside Derek and St Luke’s on a regular basis, said, “Compassion is fundamental to all nursing care, but even more fundamental is the provision of caring for dying people and those close to them. Working in partnership and having frequent communication with Derek are paramount in the rural area we serve. He has the specialist knowledge of guiding us throughout the patients care in particular with pain relief and symptom control. Our joint home visits are so beneficial to the patient, dedicating time to talk through any worries or concerns and providing a coordinated package of care to ensure they remain at home.”

Derek has also been instrumental in creating the Tavistock Palliative Care Forum, providing an opportunity for local healthcare professionals to join together every few months to share their skills and knowledge and help to deliver a seamless end of life palliative care journey. Derek says, “Education and communication are the two prime factors for effective working here in Tavistock and I think that utilising all our skills and helping to support each other are paramount in achieving this.”

However, the care Derek and his team provide for the people of Tavistock goes far beyond hands-on care. A key part of the work Derek does is encouraging conversations around advanced care planning, working closely with Brentor and Moor Compassionate Neighbours to help communities come together in care provision. For more information visit: www.stlukes-hospice.org.uk/compassionatecommunities

“Living in such a rural area does mean that traditionally it has felt difficult for some patients to get access to support, which means they become more reliant on the involvement of family members with the delivery of care. With an aging population it is important that we help to find new support networks for residents. That is why we work to educate carers and other healthcare professionals in delivering end of life care and in doing so we are helping to develop compassionate communities, giving everyone a responsibility when it comes to end of life care.”

Derek concludes, “We do still have work to do and constantly adapting the care and support we provide to meet the needs of the Tavistock community and an ageing UK population. End of life care is high on the agenda in Tavistock and I believe as a collective of healthcare professionals we are making a real difference to the Tavistock community.”

 

With just over six weeks remaining until this year’s Tour de Moor, we are still looking for volunteers to help on the day (Sunday 15 October).

We need volunteers to help with various tasks; you could be involved with anything from marshaling to sweeping; helping with the registration of all of our participants; to giving out water and saying thank you!

We’ll be holding a briefing nearer the event where we will explain the various roles and answer any questions. Any help throughout the day would be gratefully received, so please let us know your availability.

If you are able to help at the Tour de Moor, or would like some more information, please get in touch with the St Luke’s fundraising team, who will be delighted to have you on board. Don’t forget you can still sign up to take part at www.stlukes-hospice.org.uk/tourdemoor

Meet our caring and very very brave nurse Emma, who will be jumping out a plane next Saturday for St Luke’s.

Having only joined St Luke’s six months ago as a nurse on our specialist unit at Turnchapel, Emma is keen to get stuck in and raise some cash for patient care.

“It’s something I have always wanted to do and when I heard that St Luke’s organise regular Skydives, I jumped at the chance” said Emma.

“The most daring thing I have ever done is go in a helicopter and skiing, so this is jumping in at the deep end”.

Emma commutes every day from St Austell to St Luke’s “I’ve always had an interest in end of life care, since my Uni days. When I left Uni I went to work in a community hospital in Cornwall to get some general nursing experience, but when the post came up at St Luke’s it was a dream job for me. Hospice care is a very rewarding area to work in and I feel privileged to spend time with people at end of life”

Emma has already raised £500. If you would like to show her your support, check out her fundraising page.

It is not to late to join Emma next Saturday on a St Luke’s Skydive. Pledge a minimum of £345 sponsorship and you can jump for free. Sign up online.