Jill's story

That’s what happens when you dedicate your life to 28 years of caring in a place like this – it becomes part of your DNA.

And now, as she gets ready to hang up her uniform for retirement, she shares how the Lymphoedema Service she loves has changed over the years, she talks about the challenges faced and the team mates that have kept her going:

“I’ve loved seeing the service grow – we’ve all worked hard together for the same thing – there’s a real camaraderie. The service has changed over the years but we still have the same values at the core of it.”

As Angela Egdell, Director of Care Services explains:

“St Oswald’s Hospice is the largest specialist Lymphoedema Service in the North East and recognised as a national centre of excellence in Lymphoedema management. Jill has been an integral part of the Lymphoedema service and its development over the years.  She undertook training that lead on to the development of the service, which at that time was known as Day Treatment.  This later grew into a new building and a dramatically expanded Lymphoedema service.  So many patients have benefited from Jill’s care, both directly and indirectly over the years.”

Growing with the Lymphoedema Service…

Jill remembers starting out on the Adult Inpatient ward as a staff nurse in 1994, she quickly moved up and then, Jill and fellow nurse, Kath Clark, were asked to run the Lymphoedema Outpatient Clinic.

Lymphoedema is an incurable condition which can cause swelling in any part of the body.  For St Oswald’s Hospice patients, it is caused by many different health conditions, but it can also be caused by certain cancers and their treatment. To help control symptoms, it’s important for patients to look after their weight and keep active. Lymphoedema can be managed effectively by early diagnosis, referral and treatment.

“The Lymphoedema service was not what it is now,” explains Jill, “It was two half day sessions. Kath Clark and I ran it together – and we learnt on the job.”

Over the years, Jill benefitted from a wealth of training and experience to become a Lymphoedema specialist. Ten years ago, she became a Team Leader and that role became a Sister post a few years later.

Jill sees her own growth alongside the service growth as her greatest achievement:

“It’s working with a team who are dedicated to the treatment of Lymphoedema and being able to continually develop my skills. Seeing the service grow and what we offer patients now – you just wouldn’t have thought we’d be where we are today from where the service started.”

So, what kept Jill at St Oswald’s Hospice for 28 years?

“Child-friendly hours and flexibility helped!” Jill smiled.

“I work with a great team and Lymphoedema is a speciality where a lot of patients really gain benefit from. It’s not a ‘sexy’ area of healthcare – but we have really fought our corner to try and help patients.”

It’s that caring nature and making a difference that has really kept Jill going:

“Our patients have so many other issues that impact on how they manage their swelling and I’d like to think we’ve really made a difference to their quality of life.”

Jill continued:

“I’ve known some patients for years – there’s one lady who has been coming since 1997.  Lymphoedema is a life-long condition. Obviously, our aim is to support and educate patients with their self-management before they go on to be discharged from the service. However, there are some patients who require ongoing treatment and specialist support due to the severity of their swelling. So, yes, I think trying to fight the patients’ corner has been a big thing that kept me here.”

Opening up Lymphoedema care for all who need it…

Patients attend the Lymphoedema Outpatient Clinics for their appointments, at St Oswald’s Hospice, but also at Cleadon, Shiremoor and Blaydon. The service has a new rapid response unit for patients who need to be seen urgently. The Lymphoedema team also carry out homes visits, often working with district nurses, as well as telephone appointments and hospital visits, to ensure the correct care is provided for all patients.

Jill described how in the early days, most who used the service were palliative patients who had Lymphoedema secondary to having cancer treatment or as a result of advanced life limiting illnesses. Jill says:

“I like to think for those patients who are palliative, who are coming to the end of life, we can give them more options and choices about how to have their treatment. Whereas in the past, they’d have had to come in to stay at the hospice, we can now keep them at home if they are well enough.”

Jill added:

“But equally, for those patients who are not palliative, but have lots of problems, we carry out a holistic assessment. We don’t just look at their ‘arms’ or ‘legs’ for example.  We use all our skills and experience to communicate with and support patients who are living with this lifelong condition – and we find out from them what their goals are. We can adapt our treatments because we have learnt so much about Lymphoedema over the years, to ensure patients achieve the best control of their swelling.”

Jill also noted, that although older people are usually most at risk of Lymphoedema because they’re usually less mobile and more prone to get illnesses, the service does now care for a growing number of children:

“We’re the only service in the North-East that is commissioned to see children. Children who come from as far south as Teesside and to the very north of Northumberland. For a child, they are usually born with Lymphoedema due to a limitation in their lymphatic drainage system. It doesn’t necessarily present itself at birth, it can come on later. Children in wheelchairs or who are quite inactive due to other illness or disability are also at risk because the fluid doesn’t drain from their arms or legs.”

Jill says:

“We do see more children now because our service has a good reputation, so we’re signposted as a place to come.  Paediatricians and geneticists are a lot more aware and are starting to understand the causes of Lymphoedema in children.”

The biggest challenges…

Like all healthcare teams, Jill and her team faced their most challenging time during the Covid pandemic.  However, it’s a time that Jill looks back on with great pride:

“Our service did so much to keep seeing our patients during the pandemic. We were really dynamic. Our team went out to see patients in their homes during lockdown. Some staff were deployed on the Adult Inpatient Unit, some were shielding or furloughed – but we didn’t close our service down. We knew, our patients in the community were really struggling. If we didn’t go and help the district nurses, these patients would end up in hospital. So we all PPE’d up and went out there. And I really admire the team – because it was a scary time, it was tough for the team – but they did it. And I’m really proud of them for that.”

Financial limitations are a constant challenge for the charity, including our Service:

“We can’t always do what we want because we’re constrained by budgets. When we come under financial limitations we can be very dynamic and make sure the right patients get seen at the right time. We’re always trying to think of solutions of how to do things.”

One thing the team focuses on is educating patients:

“We have always strived to empower patients to self-manage their condition or support them to take an active part in their control. It’s not always easy, but education is a big part of what we do. If patients can be more independent, that’s a big success for them.”

The best bits…

As Jill said, she wouldn’t have lasted 28 years if she didn’t enjoy working at St Oswald’s Hospice. So, when asked what her best bits were, she was quick to reply:

“My favourite thing really is the support I get from others. I like that every day is different. But even when you have a bad day, you can get support and you can talk it through. We have a really good team of people.”

Jill went on:

“I feel valued, listened to and part of that team. Everyone treats me with respect. My opinion is valued and we always try and keep the patient at the centre of things – that’s what makes our service so good.”

Jill got a little emotional as she said:

“I’m going to miss my colleagues – the patients – and being able to make a difference. I’ve loved being able to help new staff and volunteers settle in. I’ve been around long enough, that I’ve seen people start, get married, have kids – so it’s being there, for all of that, that I’ll miss.”

A home from home…

Nothing means more to Jill than home and family – as a wife, a mum, a daughter, a sister, an aunt.  Following the sudden and tragic loss of her much-loved nephew earlier this year, Jill has decided it’s the right time to retire – her family need her.

When Jill came to work at St Oswald’s Hospice in 1994, what she didn’t realise was that she’d be getting a home-from-home and a second family…

“I’ve been here so long, it’s like being part of a family. I’ve spent 28 years here – my eldest daughter is younger than that!” said Jill.

In that time, she’s worked alongside colleagues who she’ll hold close as she moves into retirement:

“St Oswald’s has been a huge part of my life – I just want to thank everybody. We’ve had ups and downs but I have made some lifelong friends and I class a lot of people as part of my family.”

The feeling is mutual as colleagues describe Jill as ‘wonderfully supportive’, ‘incredibly funny’ and ‘a friend to many’ –who will be ‘missed by all’.

The future…

Jill’s dreams and goals will be on hold for a little while, whilst she restores her energy and takes some family time with her husband, Shiddhartha, their two grown-up children, Sophie and Josh – and the rest of the family.

But this is not the end of Jill’s caring years:

“I would like to do some volunteering working with young people in memory of my nephew.”

But first, she says: “I’ll just remember that I’m going to make the most of things!”

…just as she has always done in her work at St Oswald’s Hospice.

So, thank you Jill for your 28 years of caring.

Throughout Hospice Care Week, we’re sharing stories that show how we’re delivering on our aim of providing “Quality time for everyone”.  Follow us on social media to find out more.

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