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British Society of Paediatric Gastroenterology, Hepatology and Nutrition

A Christmas message to BSPGHAN members from the President

A Christmas message to BSPGHAN members from the President

I wanted to wish all our members Seasons Greetings and wish you well for the coming New Year. I hope that you all have a restful break with family and friends.

BSPGHAN takes time at the end of each year to reflect on the achievements and challenges of the previous year and set out the work plan for the coming year. Please look out for the Annual newsletter which will be available early in the New Year. In my new role as President, I was keen that the Society inform the membership of our vision of where the society should be. I hope that you managed to see our strategy set out on as “A welcome to BSPGHAN from the President” ont he homepage at https://bspghan.org.uk.

I have spent some time speaking to members. A number of themes have arisen this year. Firstly, workforce, pressures have been marked in some centres, compounded by increasing demand for children’s healthcare, greater expectations of the quality of healthcare, and growing financial pressures on the background of recruitment and retention issues. We didn’t predict the loss of a significant percentage of our colleagues to overseas centres. If units with workforce gaps pose a significant risk to service or children, then BSPGHAN can advise and encourage dialogue between Trusts with local and regional commissioners and providers, NHS England and we have a voice at the College via the RCPCH Speciality Board.

Training Reviews have shown a lack of flexibility and slow response of profession to change across the board, not specifically in PGHAN. BSPGHAN now has closer links than ever with CSAC so that we can encourage recruitment and support training, of both SPIN and grid trainees. BSPGHAN is keen to support Nursing, AHP and other staff shortages as best we can. We can encourage sharing of job plans and innovative ways of working with new team roles with colleagues.

These workforce pressures particularly highlight the need to push ahead with the BSPGHAN/RCPCH quality standards review in 2020. By describing the current state of clinical networks, in terms of what patients may expect to receive, how services are provided, and identifying how well we are performing against current standards, we can support our services. By benchmarking services, and sharing good practice, we will help units to work with local commissioners and providers to push up standards where needed, and reduce variation and inequality. We expect to circulate a questionnaire to all centres soon and will launch the work at the Annual meeting in January.

It was timely to spend some time-sharing experiences of innovative ways of working at the recent SSPGHAN meeting. Expanding roles of advanced nurse practitioners, and pharmacy practitioners, and Physicians Associates etc have proven to be great assets to teams, more than just a workforce gap solving role. New roles are now paramount in contributing to and enhancing team working some centres, essential in health care transformation. Council has shared experiences on how to attract training fellows from overseas, who we welcome to enrich our teams and potentially settle the UK as valued members of our teams.

We had recent pressures this year on our HPN services and thanks go to the NIFWG chair, who provided paediatric representation for the society in negotiations with NHS England.

Secondly, we have listened to you request to improve our website. This is almost ready to launch and in time, we would appreciate any feedback at webmaster@bspghan.org.uk .

Thirdly, we understand that the pressing need for psychological support to be embedded in our teams, and we will welcome a new BSPGHAN drive to facilitate team development.

Fourthly, this year, BSPGHAN has been tasked by RCPCH to lead on new Snomed codes. This is an enormous amount of work, for which I am extremely grateful to colleagues who have taken on shared responsibility. Our members are best placed to achieve these aims to code every step of a patient pathway to eventually inform tariffs and explore speciality specific trends.

We look forward to welcoming you to our AGM on Thursday 30th January 2020 in Brighton. Please can I ask you to send any burning questions in advance to Convenor@bspghan.org.uk so that we can do our best to respond and offer adequate time to pay due attention to your queries or concerns. I would like to encourage feedback from members to ensure the AGM (and the Society) may aim to fulfil everyone’s needs.

All these initiatives, as well as the important role that BSPGHAN has in promoting research, come at a cost to the Society and we need to carefully consider the way that we are funded and the many challenging issues that come with the industry support we have relied on for many years. We look forward to an open debate about this and please see our discussion on this in our forthcoming newsletter.

Wishing you all a healthy and happy season and warm wishes to you all for the New Year.

Sue Protheroe, President December 2019

PFIC trial

PFIC trial

Mirum Pharmaceuticals is striving to bring transformative medicines who have rare cholestastic liver conditions.  In keeping with their mission they have instituted a a Phase 3 study called MARCH to evaluate the safety and efficacy of maralixibat in pediatric patients with PFIC. Eligible patients in this clinical study may help provide new insights into PFIC and could lead to the first approved drug therapy.  For full details please visit https://pfictrial.com/

New 2019 IBD Standards launch

In June the new IBD Standards has been launched with the aim to improve how we care for people with Inflammatory Bowel Disease (IBD) across the UK. These have been created by IBD UK, a partnership of 17 patient and professional organisations, including BSPGHAN, the BSG, CICRA and Crohn’s & Colitis UK.

The IBD Standards say what high-quality care should look like at every point of a patient’s journey – from first symptoms, to diagnosis, treatment, and ongoing care, whatever their age and wherever they live in the UK. They also set out how an IBD service should be organised and managed to deliver this. Paediatric and adolescent care has been considered throughout.

Announced at the BSG annual conference, these 59 statements set out what good care and treatment looks like for patients with IBD, with the aim that every IBD service in the UK will work to meet these.

A new digital IBD Benchmarking Tool has been developed to help with this, so that services can assess how they are doing against the IBD Standards and plan to improve. A new UK-wide IBD Patient Survey will give people with IBD the opportunity to rate their experience of care, allowing patient experience to support the development of a service. This will provide an opportunity to push through real change, support with business cases and make the case for additional resources needed.

Through this process, healthcare professionals and patients will be able to work together to improve standards of care for everyone with IBD across the UK.

What your team needs to do to make the IBD Standards a successful reality:
• Register for the IBD Benchmarking Tool – from now!
• Promote the IBD Patient Survey in your service from 8th July
• Incorporate the IBD Standards in your overall service design and work, and making opportunities to discuss and raise awareness of the IBD Standards at meetings, events and talks
To see the full list of IBD Standards, register for the IBD Benchmarking Tool and find more information visit ibduk.org. For any queries, and to obtain flyers to promote the IBD Patient Survey, email info@ibduk.org.

Yours sincerely,


Dr Rafeeq Muhammed
Chair of BSPGHAN IBD Working Group

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