Meet LTV Specialists Rachel van den Brink-Budgen and Tina Howlett

It was perhaps written in the stars that Rachel van den Brink-Budgen and Tina Howlett would bring their skills and expertise to East Anglia’s Children’s Hospices (EACH). The pair are key members of the organisation’s care team, both specialising in long-term ventilation (LTV).

Rachel, a clinical nurse specialist, is based at The Treehouse, in Ipswich, while Tina, a senior care assistant, works at The Nook, in Framingham Earl, near Norwich. Having similar roles is not all they have in common because both knew early in their careers they wanted to work with children at EACH.

Rachel made her mind up within minutes of starting out as a student nurse on placement at Quidenham. Tina was similarly adamant after caring for children and young people who accessed services at the former Norfolk hospice.

“I trained at the University of East Anglia and worked at the Norwich and Norfolk University Hospital,” said qualified children’s nurse Rachel. “I wanted to get experience but always knew I didn’t want to work in the NHS. I wanted to work in a hospice and, as a student, spent a lot of time at Quidenham.

“I remember not knowing what to expect when I got my first placement. However, within ten minutes of arriving, I knew it’s what I wanted to do. It was almost instant. The pace was completely different and the amount of time, care and attention you can give to children was like nothing I’d experienced before. The level of care was mainly on a one-to-one basis and just incredible.

“I came away that first day feeling I’d made an impact. It was a powerful feeling and I did my dissertation on the impact of hospice care on children with life-limiting illnesses. I found it so fascinating.

“When I spent time in a hospital, I always stepped away feeling the level of care was sub-par, because we were so stretched. You’d do your best but often it didn’t feel good enough. In contrast, at the hospice I’d always come away feeling positive about everything I’d done and then you start to see the difference you’re making to families.”

Rachel, 38, took up a role with the Children’s Trust, based in Tadworth, Surrey. She spent a couple of years there, helping children with complex healthcare needs, before starting to work with children on LTV. Then, 13 years ago, a job came up at EACH. She hasn’t looked back since, arriving as a band six nurse before moving into the LTV team.

Tina, 29, was similarly clear about her career pathway and started out by studying childcare at college.

“I knew childcare was for me and my sister worked for a company that helped children with complex care needs, including tracheostomies,” she said. “I was always interested in what she told me about her job, probably from about the age of 16.

“I got a job in healthcare at the age of 18, working with the elderly initially, but realised that definitely wasn’t for me. In my next role I started working with a young lady with complex needs, who needed 24-hour ventilation. In that time I also got to work with a baby who accessed LTV care at Quidenham.

“I heard about the hospice and how the mum spoke about the care her son received. It was very positive so when I saw a job advertised at Quidenham, I jumped at it and arrived as a band three care assistant in 2015. After three years on the care floor, I managed to secure a role on the LTV team. It’s been wonderful and really given me a chance to use my skills.”

LTV is when ventilation is provided every day for three months, where the intention is to maintain the patient at home on continued ventilatory support. The service delivered is comprised of a team of specialist nurses and care assistants. They provide advice, support and hands-on care to any service user with a life-threatening condition or complex respiratory health needs.

Rachel said: “It’s hugely rewarding and you get to see the difference you make. In terms of quite a lot of the children we take onto our caseload, we’ll look after them for a number of years, until they’re discharged from the service. Sometimes they’re successfully weaned off ventilation, sometimes we’ve helped them transition to an adult hospice and sometimes, of course, they very sadly pass away.

“More often than not, these are prolonged pieces of work and you get to build very strong relationships with the child and their family. It’s rare you get to do that in nursing. Not every children’s hospice offers the service we do and for families it’s a bit of a luxury.

“We’re a responsive service and families appreciate that, even if it’s just us helping them chase things. It’s one less thing for them to do in the midst of a very crazy life.

“A hospice is like nowhere you could work and we’re so lucky to spend time in this environment. They’re faultless, purpose-built facilities and everyone works so well within our teams. We work closely and have such great communication. It’s incredible and, again, not like anything I’ve experienced before. It’s a happy place to work. The staff get on well and everyone supports each other.”

Tina is similarly positive.

“One of the lovely things is that we don’t just support the child and parents – we support the whole family, including siblings and grandparents,” she said. “You don’t get that elsewhere. We spend a lot of time talking to them. We get to know them well and that’s an opportunity you don’t often get in other areas of nursing.

“The whole family are holistically supported and you really appreciate that when you go along to one of our family days. They’re lovely occasions to be part of.”

Given the nature of their jobs, Rachel and Tina admit there can be challenging, emotional days. However, both feel they are in the right place to flourish and feel supported, with a heavy emphasis on wellbeing.

“Working in a hospice environment can inevitably be difficult, because of the nature of what we do,” said Rachel, who lives with 11-year-old daughter Arabelle in Felixstowe. “However, staff wellbeing is taken seriously at EACH. Again, it’s not something I’ve experienced to that level before.

“We have lots of management and clinical supervision and if you have a query you’re always listened to. EACH is a great organisation in terms of making sure staff have the right level of support to look after their own wellbeing. We’re very good at having debriefs, with people from our own hospices but also colleagues from other sites.

“When we have difficult times, we always try to factor in extra time to sit down and talk about what’s happened. It would be foolish to say you never take things home with you but these things help reduce that.”

Furthermore, Tina sees her workplace as the perfect environment to learn, progress and develop her career.

“It’s only human to take things home sometimes,” she said. “Some days are difficult and end-of-life situations can have a real impact. However, we have a very close team and there’s always someone on hand to chat to and offload. Whenever we have locality or team days, time is always dedicated to wellbeing and that really helps us bond.

“We’re also very good at sharing the workload so that no-one feels intense pressure. You can leave something with a colleague and know it will get done. In addition, we’re always encouraged to develop ourselves and take advantage of both internal and external training packages. No request is ever shut down.”

Both Rachel and Tina, who lives in Billingford, near Diss, proclaim with confidence that EACH leads the way in children’s hospice care – as testified by the fact all three hospices were rated ‘outstanding’ following the latest Care Quality Commission (CQC) inspections.

“Those findings speak for themselves,” said Tina. “To get an ‘outstanding’ is hard to achieve and yet we manage it most years. That speaks volumes.

“I attended a Hospice UK Conference earlier this year and delivered a presentation on the LTV service at EACH. Despite the conference being heavily based around adult hospices, our name was well known. As soon as I mentioned EACH, people were aware of us and respected what we do.

“That’s impressive, given that we’re a relatively small organisation and that I was up in Liverpool, alongside colleagues from across the UK. It shows our reputation travels a long way.”

Rachel shares that sense of pride.

“We take the level of care we provide so seriously,” she said. Our focus is always on best practice and it’s always up to date and evidence-based.

“When we set up our long-term ventilation team, I don’t think there was another children’s hospice in the country that had such a thing.

“EACH ensures staff are upskilled to deliver care of the highest quality and I feel proud to work for a service that aims to lead the way in children’s hospice care.”

For further information about this release please contact:

Matt Plummer | Media and PR Manager | 07738 328058 |

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