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March 2015 Bulletin

Contents

Watch our new Support Line film

Introducing our new specialist nurses

Updated patient information

Update on access to Abraxane

12th National Hepatobiliary and Pancreatic Study Day  

EUS Assessment clinic

The importance of a dedicated HPB cancer service within secondary care

Initial results from our CNS survey

Trek for Hope, Great Wall of China

Trekking not your thing? Take part in other events

 

Watch our new Support Line film

Our specialist nurses can help you support your patients through their diagnosis and treatment for pancreatic cancer. Watch our new film about our free and confidential Support Line to find out about the help they offer.

You and your patients can contact the Support Line on Freephone: 0808 801 0707, or email support@pancreaticcancer.org.uk

Introducing our new specialist nurses           

We’re very pleased to welcome Chris Gilbert and Rachel Convery to our Support Line team.

Chris Gilbert

Chris Small

Chris has been nursing for 10 years and started work in the acute setting. He moved to palliative care 5 years ago. This included working in a hospice in-patient, day-care and hospice at home team. Most recently he managed a caseload within the community setting providing end of life care and support to patients and their families including those suffering from pancreatic cancer.

 Rachel Convery

Rachel

Rachel has been nursing for 19 years and spent the majority of these years working within cancer care. She has worked in surgery, chemotherapy, palliative care and clinical trials. Rachel’s main experience is caring for patients with gastro-intestinal cancer, including patients with pancreatic cancer. Rachel is based in Northern Ireland and will also be helping us to develop some local services and make links with the hospital teams in this area.

Updated patient information

We have updated our information about surgery, including our two fact sheets:

  • Surgery for operable pancreatic cancer – which has information about the different operations available, what’s involved, and the risks and benefits.
  • Surgery and other procedures to control symptoms – with information about inserting stents, bypass surgery, and nerve blocks to control pain.

All our information is updated every two years, based on the latest available evidence, and reviewed by experts in the field and people affected by pancreatic cancer. Our information is accredited by the Information Standard. This means we provide information that you can trust, to give to your patients.

You can download or order all our information for free here.

Update on access to Abraxane

Abraxane (nab-paclitaxel) has now been approved for routine use on the NHS in Scotland and Wales, and currently remains on the Cancer Drugs Fund in England. We know from recent CDF figures that 395 notifications of use were made in England between April and December 2014.

Clearly more patients are being treated with Abraxane. We have received anecdotal evidence ourselves of some patients responding extremely well but we are also aware of the toxicity of the drug and are aware some patients are struggling with side effects. To help us better understand the impact of the treatment, we would welcome any anecdotal feedback from you as to how patients are faring on the treatment regime. Any comments received will be treated in the strictest of confidence. If you are able to share your experiences, please email our Head of Campaigns and Policy, David Park, on david@pancreaticcancer.org.uk.

12th National Hepatobiliary and Pancreatic Study Day 

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We held the 12th National Hepatobiliary and Pancreatic Study Day in Crewe in October. It focussed on the different treatments options for pancreatic cancer and the ways in which health professionals can improve relationships with pancreatic cancer patients.

We received some great feedback from delegates. The main messages that health professionals took away from the day included updates about current treatments such as chemotherapy, pain management and surgery, and information about new treatments such as Nanoknife. People found the information about using pancreatic enzyme replacement therapy such as Creon® particularly helpful.

However, for the majority of delegates (83%), it was the information about how to break bad news – presented by the inspirational Mr Rami Seth – that was the most significant message of the day.

Many of the delegates were also interested to find out about our patient information. While many already use our publications, all of those who weren’t aware of them said that they would be ordering publications from us in the future.

The presentations from the day are available here. (You will need to sign up the health professionals pages on our website to view these.) You can download and order our publications here.

We run free pancreatic cancer study days throughout the year. Find out about upcoming events here. The next study day is being run In partnership with Addenbrooke's Pancreatic Unit, Cambridge, on 5 June 2015.

EUS Assessment Clinic – presentation by Elspeth Cowan, Senior UGI CNS, Glasgow

The EUS Rapid Access Clinic at the Royal Infirmary Glasgow provides a regional service for the West of Scotland and has been running for over 2 years. EUS is being used more frequently as a first diagnostic intervention. For some individuals attending the clinic – held in our Endoscopy Unit – it is the first time they access accurate information regarding a potential cancer diagnosis and a formal clinical review.

A recent research project revealed that 59% of patients attending the service had lost 10% of their body weight and with early multidisciplinary intervention 56% of the patients in the study stabilised their weight. These findings were presented at the Panc Soc meeting in 2014.

See the presentation on our Health Professionals Forum.

If you’re not already a member of the forum, sign up here

Hepato-pancreatic-biliary (HPB) cancer service at Wirral University Teaching Hospital. The importance of a dedicated HPB cancer service within secondary care – by Ann Boon, Advanced Nurse Practitioner/HPB

Patients diagnosed with a hepato-pancreatic-biliary (HPB) cancer have diverse, complex, clinical needs, often presenting with advanced disease. Nationally, dedicated HPB cancer teams are rare outside tertiary regional centres, with the patient being a forgotten cohort within secondary care.

Prior to 2008, patients diagnosed with a HPB cancer were not resourced for by the trust, as it was felt numbers were too small to warrant having a dedicated service. As a result there was crisis management, ad hoc referrals to the regional specialist multidisciplinary team meeting, breaching of government targets, and provision of fragmented substandard care which was a lottery. With no ownership, it was a faceless service with no clinical or nurse lead.

To enable HPB cancer patients to receive high quality, holistic care with timely referral to the regional specialist centre, a dedicated HPB cancer service needs to be in place within secondary care.

After a long two year journey, which involved highlighting the unmet needs of this cancer group, process mapping their protracted journey, and comparing it to how it should and needed to be, stumbling blocks were turned into stepping stones, and a dedicated HPB cancer service for the trust was established In June 2008. This was the first service of its kind outside the tertiary centres within the Merseyside and Cheshire region.

Our annual referral rate for the first year of the service in 2009 was 272 patients with a 72% increase in referrals to the regional pancreatic unit, and a 300% increase to the regional liver unit. In 2013 we had 388 patients referred to the HPB cancer service - 227 patients were pancreatic patients, 93 patients were diagnosed with a pancreatic cancer. A robust IPMN nurse led surveillance service with a case load of nearly 300 patients forms a large part of the pancreatic service, which is impacting on pancreatic cancer survivorship. Radiology alerts occur on all imaging performed within the trust, covering primary care requests as well. This process ensures that all suspected HPB cancers are captured, and fast tracked into our HPB cancer service.

In 2008 I was a lone worker with one HPB consultant. In 2015 we have 3 HPB consultants with 2 more consultants newly appointed, a part time liver clinical nurse specialist and a full time HPB clinical nurse specialist about to be appointed. I now work part time in a consultancy capacity to the HPB cancer service.

Our local HPB cancer service has been an effective interface within secondary care. All patients with a HPB cancer are now managed and cared for by experts in their cancer, and care is no longer a lottery or fragmented. A seamless timely transition of care between primary and tertiary care with effective case management and communication now exists.

Initial results from our CNS survey

For the past month we have been running an online CNS survey, to update the findings of a similar survey we carried out back in 2011, which helped us produce our Study for Survival report. We wanted to look at how conditions and attitudes have changed over the past four years.  

We have, to date, received 76 responses: thank you to everyone who took the time to reply. We will produce a more detailed analysis of the results in due course but it is clear that CNSs working with pancreatic cancer patients are facing increased workloads and putting in lots of extra unpaid hours. For instance,

  • 33% of survey respondents agree with the statement that they ‘are able to spend as much time with my patients as necessary,’ down from 47% in 2011; 97%
  • 97% said their workload had increased over the past 12 months, up from 85% in 2011;
  • And 91% thought their workload would increase further over the next twelve months.

As a charity we know the vital importance of CNSs to good patient experience and how much they are valued by both patients and their families. These survey responses will allow us to campaign to better ensure CNSs have the capacity and resources they need to spend more time helping support patients in future.

Beyond campaigning, we may be able to assist in more direct ways too. For instance, one of the survey questions asked ‘what more information and support would help you to better help patients and their families?’ The top response, with 79% or respondents agreeing with the statement, was ‘Local patient/carer support groups.’ We have helped establish and support a number of patient/carer support groups around the country over the past 12 months or so, details of which can be found online here. If you would like to work with us and help set up a group in your area, do please get in touch with our Involvement Manager, Debbie Wells, via getinvolved@pancreaticcancer.org.uk, who would be happy to help.

Despite some of the negative survey responses, we do know that things can work well. See our case study from Wirral University Teaching Hospital as an example of good practice.

If you have not yet taken the survey, you can still do so. It is available on the Healthcare Professionals section of our website and can also be accessed directly here. Please also share it with colleagues as appropriate.

Trek for Hope, Great Wall of China, 17 – 25 October 2015

Realise a dream and come with us on a five-day trek along The Great Wall of China.  This trek is exclusive to Pancreatic Cancer UK and is a great opportunity for you to meet new friends.  Read more on the website or call the office to discuss it with Hannah, our Fundraising Officer, who did the trek last year.

Julie Ingmire, an Upper GI & HPB Cancer Nurse Specialist,was part of last year’s group. She tells us about it here.

I have worked with pancreatic cancer patients almost every day for 10 years. I have seen some advances in investigations and the diagnosis, but very little advancement in the overall survival.  So this was my way of trying to do my bit to help Pancreatic Cancer UK change the stats.  

I had a family member and a close friend die within a month of each other (not cancer related) at Christmas time 2013. This tends to be quite life affirming and I started thinking about my ‘bucket list’. Two things on it were to see the Great wall of China and to do a ‘challenge’. Then I received an email from Pancreatic Cancer UK with this event and thought –  just do it!!

Having worked at 2 hospitals and having an extensive network of colleagues, I thought I had quite a good chance of reaching the minimum sponsorship target. I was however simply amazed at people’s generosity. Having sent out a generic email, the donations started to come in. I went to thank people in person and one of those was Pam Crozier, our Endoscopy Manager. She expressed a desire to do it herself – I said do it, so she did!

Unfortunately neither of us could make the introduction day in August. We duly arrived at the airport on the 25th Oct, met our other trekkers (inc Hannah from Pancreatic Cancer UK), got our challenge packs and set off on our 9-10hr flight.

We arrived in Beijing, and were met at the airport by Charity Challenge local guides and transferred to our lodge. It was decided by the guides that we should have a ‘short’ walk along the wall that afternoon before dinner, which after our flight we were not physically or mentally prepared for. It was tough – what had we let ourselves in for?!

Our week trekking was a combination of short but demanding days along the un-renovated section of the wall, to Black Dragon Pool Park/Reserve, a spectacular nature reserve set in a deep valley with cliffs rising on either side with clear pools and waterfalls. Trekking was through the park and caves which was steep in places but with stunning scenery. The downhill was very steep and scary in places. My toes hurt and so did Pam’s knees!

Our longest day (Wednesday) had us walking for 8hrs into the evening. This trek was more undulating, but still with some steep climbs and descents. Unfortunately when we got to the lodge in the evening we had no hot water and the cold shower was not what we wanted.

Our last 2 days were ‘easier’ in comparison and shorter, with the final day’s trekking culminating in a steep 462 steps to the Stairway to Heaven. There we received a big hug, a medal and a cup of Chinese bubbly for our efforts for the week. There were also a lot of tears, in part for what we had accomplished but also remembering why we had done this in the first place.

In summary – no blisters, but black toes, sore legs and ripped trousers, the toilets were an experience, the food was hit and miss (I think it was pork and chicken), the weather great and the whole experience amazing. We met the most inspirational, awesome people who will be friends for life. Would we do it again, absolutely.

Trekking not your thing? Take part in other events

If trekking along the Great Wall of China is not for you, then there are all sorts of other challenges that you can join to support Pancreatic Cancer UK. All of these are available on our website, from Jump in July (skydiving) to runs, walks and cycle rides in the UK and abroad.  Coming up are:

  • Bupa 10K (May)
  • Prudential RideLondon 100 (August)
  • Royal Parks (October)  

All of these are in London. Or at the other end of the country is the Great North Run in Newcastle in September. 

Find out how to take part in an event here. If you want more information on any of our events, email fundraise@pancreaticcancer.org.uk

Or come along and support Richard Farquhar, who is taking on the challenge of a lifetime and walking 2,750 miles between 60 racecourses in the UK. This epic, blister inducing challenge started on 20 March and will take 13 months. Richard needs your help. If you can join him as he arrives at a racecourse near you and assist with bucket collections, or walk around the course with him before the races, do sign up on the Walking the Courses page.