Congratulations to Dr Philip J Smith, Royal Liverpool Hospital, Liverpool University Hospitals Foundation NHS Trust, Liverpool, and his team for being runners up for the CSSC Service Development Prize 2021.

Read his full submission and watch his presentation recording below.

‘Transitioning during a time of huge transition’ in the North West of England: Development of the first paediatric to adult transition service for all young people with chronic gastrointestinal (GI) conditions 

Lisa Critchley1, Gail Melling2, Fiona Cameron2, Philip J Smith1,2,3 

1. Royal Liverpool Hospital, Liverpool University Hospitals NHS Foundation Trust (LUHFT), Liverpool, UK 
2. Alder Hey Children’s Hospital NHS Foundation Trust, Liverpool, UK 
3. University of Liverpool, Liverpool, UK 

Correspondence : Dr Philip J Smith, Consultant Gastroenterologist, Royal Liverpool Hospital, Liverpool University Hospitals NHS Foundation Trust (LUHFT),  Honorary Consultant at Alder Hey Children’s Hospital NHS Foundation Trust, Honorary Senior Lecturer at the University of Liverpool; Email: Philip.Smith@liverpoolft.nhs.uk

Summary of application for CSSC prize

• The North West (NW) of England has the worst health related outcomes and inequalities in the UK, with some of the highest rates of deprivation and poorest educational attainment also (1). 
• Both NICE guidance (2) and BSG guidance (3) on transitioning patients with chronic GI disorders have been developed but the NW of England does not have an established centre of excellence for transitional care for young patients. Consequently patients frequently were transferred (as opposed to transitioned) from tertiary paediatric care to units whereby patients and staff would struggle to manage patients with often complex needs and expectations.  Patients would frequently then return to tertiary adult care at a later time point. 
• Traditionally GI transition has been almost exclusively preserved for patients with inflammatory bowel disease and some liver transplant patients, however, the needs of patients with other chronic GI disorders are overlooked i.e. eosinophilic oesophagitis, nutrition, and polyposis patients.  Transitioning patients are universally accepted to be a very challenging patient group to manage not just because of their disease sequelae but also because of huge changes in sexual and psychosocial development, body image and risk taking behaviours, employment/educational milestones and the development of personal autonomy away from parents/guardians and carers. 
• The Royal Liverpool Hospital (RLH)(part of Liverpool University Hospitals NHS Trust) and Alder Hey Children’s Hospital NHS Foundation Trust (AH) have developed a ‘final common pathway model’ of transition for patients with a broad range of chronic GI disorders, triaging and streaming patients into appropriately focussed transition clinics (both new and follow up). 
• The transition service (clinics and MDTs) were developed just before the COVID-19 pandemic and very quickly adapted into online video consultations allowing face to face interaction both between paediatric/adult teams as well as patients/families and other healthcare professionals. 
• The introduction of the new transition clinic has enabled equitable access to transition for all young people with a variety of chronic GI disorders, reduced unnecessary admissions to hospital, successfully reduced the pressure on adult GI services and empowered development of both transition keyworkers and psychologist development despite the COVID-19 pandemic and the difficulties of managing a challenging patient group. 

Why was a new service needed? 

Alder Hey Children’s Hospital NHS Foundation Trust (AH) is a regional centre of excellence for GI care and looks after a large number of adolescents and young people (AYP) from all over the region with chronic GI diseases approaching transition age (>16 years old).  Most of these patients will require on-going, sometimes lifelong gastroenterology input. Structured and developmentally appropriate healthcare is essential for successful transition to adult care. 

Prior to the development of the transition service, there was no regional centre in the NW of England recognised for its formalised and structured transition service. Over the preceding 6 months prior to the COVID-19 pandemic starting in the UK (March 2020), we developed a new transition service for AYP patients with chronic GI disorders utilising BSG transition guidelines published in Gut in 2017 (3). The service was designed specifically to: 

• Promote self-advocacy amongst patients 
• Educate patients and improve compliance with medications and attendance 
• Address any psychological problems that could be associated with their GI health  
• Improve their long-term health outcomes through developing their independence and confidence with self-management and engagement with healthcare services outside of parental/guardian control 

Previous ‘transition’/transfer model – pre-March 2020 

In our region there was a clear deficiency in transitional services – not just for IBD and liver transplant AYP patients but across all GI disease.  In fact, the historic transition/transfer model used at the Royal Liverpool Hospital (in conjunction with Alder Hey Children’s Hospital NHS Foundation Trust) was essentially a transfer of care to adult services as seen in the model (see Figure 1).  

In the previous model of working

• A patient would be offered to move to any hospital the patient wished to, by the AH team regardless of patient complexity and local expertise or whether transition services/clinics were available. 
• If the patient decided they wanted to move to RLH for adult care, a referral letter would be sent from AH to the RLH and a ‘transition clinic’ date would be set 2-3 times a year.  The RLH was the only centre in the Merseyside region that offered a specific clinic. 
• The patient and their carer would be seen for a joint clinic review with their paediatrician from AH, and an adult Consultant Gastroenterologist from the RLH. This would be the patient’s first initial appointment in an adult setting and meets the criteria for a ‘transfer’ of care rather than transitional care. 
• Only patients with IBD and a few patients with polyposis or liver disease would be offered this initial consultation. 
• Following their initial appointment the patient would then be seen in the general adult follow up clinic and be allocated just a 15-20 minute time slot without any additional assessment of ability to cope in that setting, nor appreciation of their readiness to manage in the adult environment. 
• Some patients may have chosen to be transferred directly from AH to their local hospital where they may not have the resources or expertise to care for these complex conditions. Sometimes patients have had to be referred back to the RLH later down the line following a breakdown in care. 

Problems with old transition model (pre-March 2020) 

• Lack of support and continuity during this crucial transition period could have led patients to become disengaged with very little transitional care support occurring, leading to poor compliance and poorer outcomes with care. 
• Seeing a different Consultant / Doctor / Nurse each time within later clinics leaving patients and their families feeling frustrated and lost. 
• No mechanism for identifying the numbers of patients moving from AH requiring transition care and no clear  idea what their needs or requirements are.  In addition there was no way of tracking how many patients referred to other hospitals by AH later return to RLH. 
• An absence of a complete holistic approach to patient care and a focus only on certain conditions. 
• Patients needing invasive investigations without a general anaesthetic and no preparation or explanation about this for patients or families. 

New Transition Model post March 2020 – the ‘Final common pathway’ 

Given the deficiencies in the old transfer model of patient care, we developed an agreed pathway for all transition patients with all types of chronic GI disorders (see Figure 2).       

The premise of the ‘final common pathway’ is that unless the patient/carer explicitly ask to opt out of being transitioned then they would be referred and seen initially as a new patient in transition clinic and then followed up in transition clinic until they were ‘ready’ to move fully into the adult clinics. 

Key members of the team

Over the last 12 months essential members of the transition team have been recruited and developed, including: 

• Lead Transition Consultant – Dr Philip Smith, Lead for GI transition at RLH and joint first author of the UK BSG transition guidelines (3) 
• Transition Key worker/Specialist Nurse – Lisa Critchley – appointed March 2020 
• Clinical Psychologist – Dr Rachel McGowan – appointed January 2021 
• Strong administrative support at AH and RLH site with agreed administration pathway 
• AH Gastroenterology Team – Dr Fiona Cameron Lead for GI transition at AH and Paediatric GI clinical nurse specialist, Gail Melling  
• We had also had full engagement with allied health care professionals including dietetics (hospital and community), genetic counsellors, nutrition nurses (enteral and parenteral), surgeons (adult and paediatric) and endoscopy nurses. 

Rapid adaptation of transition service due to COVID-19 pandemic

Initially the new transition service was designed for face to face consultations in outpatient clinics. However, due to the COVID-19 pandemic we had to rapidly adapt our service to a new remote way of working to ensure social distancing. Due to the special needs of many transition patients, telephone consultations were not felt to be sufficient for patients and guardians. Therefore, all consultations have been over a NHS secure video platform ‘Attend Anywhere.’ Building a rapport with our new patients is vital to the success of the clinic. 

Prior to first appointment  

• Transition is discussed between the paediatric team and the patient in preparation of transition clinics. The patient and parents must be well prepared and consented by the paediatric team. 
• Referrals must be made from paediatric to adult consultant and must be accepted on case by case basis. 
• Referrals are then triaged by the adult consultant and keyworker to the appropriate new patient clinic - IBD, General Luminal, Hepatology, Nutrition and Polyposis transition clinics. 
• Frequency of clinics include 1 new patient clinic (with paediatrician) to 3 follow up clinics per month (rotating the focus of the new and follow up clinics). 

The following criteria were used for inclusion and exclusion criteria for clinics: 

Inclusion

1. The patient must have chronic GI disease that potentially requires long term follow up by a Gastroenterologist/Hepatologist. 
2. Patients accepted must be >16 years old to be seen adult GI consultant/AHP. 
3. Be ‘Ready’ on the “Ready, Steady, Go!” pathway. 
4. Referral from AH, within the wider trust and within NW/Merseyside region and have consented to being referred. 

Exclusion

1. Not being ‘Ready’ on the “Ready, Steady, Go!” pathway. 
2. Have an eating disorder or suspected eating disorder. 
3. Have a chronic pain condition without a GI focus for disease being identified. 
4. Unstable disease i.e. current flare of colitis. 
5. Lack of consent for transition clinic from patient and/or carers. 

‘Meet and greet’ sessions online 

Before meeting patients at their first appointment, we organise a ‘meet and greet’. In ordinary circumstances this would be held in a lecture theatre, however due to the pandemic we have been doing this via Microsoft Teams. During this meeting we: 

• Introduce patients and their families to the team at the RLH and explain the purpose of the transition clinic. 
• We explain what the service has to offer. 
• The additional support we can provide and contact details of our keyworker. 
• We discuss how to use ‘Attend Anywhere’ so they are prepared for clinics. 

New patient clinic and pre- and post-clinic MDT 

The structure of new clinics is as follows: 

1. Prior to clinics, administration teams transfer letters and investigation reports from AH to RLH. 
2. We have an agreement with AH to host a new patient clinic the last Wednesday of each month.  
3. There is a pre-clinic handover and post-clinic MDT with the AH team to establish clinical and transitional issues. 
4. All clinic appointment slots are 30 minutes in total – these can be increased in time for very complex patients if identified before clinic. 

Attendees during the initial appointment include:  

• AH Consultant Paediatric Gastroenterologist 
• RLH Consultant gastroenterologist 
• Clinical Nurse Specialist from AH 
• Transition Key worker/ Specialist nurse from the RLH 
• Clinical Psychologist from the RLH (where pre-identified need is established) 
• Additional AHPs (if pre-identified in advance). 

Follow up patient clinic and pre- and post-clinic MDT 

Every other Wednesday of the month is a follow up clinic for our newly transitioned patients. Again, patients are given a half an hour time slot. This extra time allows us to build rapport, take a clear history, assess their psychosocial status and enforce education. The focus is on the patient being ready to manage their own condition whist ensuring to have a full and active life. In these clinics the BSG Guidance on transition are utilised in order to ensure patients are fully transitioned and then ready for transfer into adult clinics at a later date (See Figure 3) (3). 

During clinics, we use the questions to measure compliance and knowledge of medications; we encourage patients to speak for themselves during consultation, something that is usually very new to them.  We ask patients about their body image and educational goals and assess their need for psychology input (See Figure 4) (4, 5).

Patients can remain in transition clinic until the age of 21 years old if required.

Assessing patients readiness via ‘Ready, Steady, Go’ programme questionnaires (6)

To measure a patient’s readiness to move on from transition clinic to adult clinics, we have used the ‘Ready, Steady, Go’ programme questionnaires.  The programme is a traffic light system of questionnaires, designed to assess patients throughout their transition (see Figure 5).

Key performance indicators (KPIs) from the transition service

We used Key performance indicators (KPIs) to assess the success of the transition service, including: 

• Number of patients referred to the service (subdivided by conditions) compared to prior to old transition service. 
• Number of patients transitioned to date according to readiness (patients achieving ‘Go’ on the ‘Ready, Steady, Go’ questionnaires). 
• Hospitalisations. 
• Patient and guardian satisfaction (must be >75% given limitations of COVID-19 pandemic) or dissatisfaction (must be 670% increase in patient referrals.   

The breakdown of patients includes: 

• 55 IBD patients (31 Crohn’s Disease, 20 Ulcerative colitis and 4 IBD-Unclassified) – 68% of patients 
• 45 patients (82% of IBD patients) are on biological treatments  
• 15 other patients (cyclical vomiting, non-specific small bowel inflammation, functional issues, IBS, Coeliac disease, eosinophilic oesophagitis (EoE), multi-visceral transplant and multi-organ vasculitis patients) – 19% of patients 
• 8 Hepatology patients – 10% of patients 
• 3 Polyposis patients – 4% of patients

Number of patients transitioned to date according to readiness 

36 patients (44%) moved from transition clinic to adult services according to readiness.  The breakdown of next destination is below: 

• 3 patients discharged to GP 
• 3 patients moved to AHP clinics (i.e. Nutrition nurse, dietetic clinics) 
• 4 patients moved to specialist clinics (i.e. upper GI clinic for EoE patients) 
• 1 patient transferred to a local hospital 
• 1 patient moved into an eating disorder clinic
• 2 discharged back to Rheumatology transition team

Hospitalisations

There have been only 3 patient hospitalisations to RLH of transition patients since the service was started in March 2020 – despite the COVID-19 pandemic: 

• 1 patient admitted with a renal stone with UC 
• 1 patient with IBD with psychological problems and a prior history of anorexia nervosa presenting to A&E spontaneously at the weekend– all tests were normal and discharged home within 24 hours. 
• 1 patient with cyclical vomiting and autism has been admitted to hospital 3 times but admission has been supported before deterioration in condition leading to earlier discharge and referral to national quaternary specialist centre for opinion and management 

Patient and guardian satisfaction or dissatisfaction

There has been excellent engagement with our keyworker nurse since development of the service with 4 letters of thanks being sent directly to the RLH Chief Executive regarding the service which has resulted in 4 letters of commendation to Dr Philip Smith and Lisa Critchley in turn. 

The transition service has attracted and enabled the development of an integrated psychology service, another part of the UK IBD Standards alongside transitional services (7), and received letters of support from Crohn’s and Colitis UK, Guts UK and CICRA.  This service has appeared on the IBD UK website also (8). 

Using a Likert scale (1=strongly disagree, 5=strongly agree) the following feedback has been obtained from 61 patients and families up to March 2021: 

• 95% of patients (98% of guardians) either strongly agreeing or agreeing the transition service supports their needs and  provides essential support whilst moving from paediatric to adult care. 
• 92% of patients (95% of guardians) either strongly agreeing or agreeing the transition service has enabled them to improve education of their condition and compliance of medications. 
• 80% of patients (83% of guardians) either strongly agreeing or agreeing that the ‘Attend Anywhere’ platform has been easy to use in order to do consultations. 

Additional benefits – Transition Key Worker

There are a number of additional benefits from the transition service, but a key one has been the development of our transition key worker (Lisa Critchley) and her role. The key worker role is a new role in this service and has allowed the development of a band 6 IBD nurse to expand experience with both AYP patients with IBD but with other chronic GI conditions.  This has utilised only 0.5-1 day per week time of both the keyworkers time and the lead consultant gastroenterologist (in adult services).   Responsibilities for the role, which is in development, include: 

• Being the main point of contact for both patients and carers via a transition specific helpline and email. 
• Overseen the transition process from a management and administration perspective. 
• Co-ordinate new biologic prescriptions quickly and efficiently for IBD patients. 
• Expedite and arrange investigations post clinic, providing flexibility to AYP patient needs. 
• Referrals to other services and AHPs i.e. dietitians or other teams. 
• Playing a key role in patient education and reassurance of guardians. 
• Ensuring all aspects of transitional care are covered so the service remains holistic. 
• Ensuring the patients and guardians are familiar with new technologies. 
• Presenting with transition lead at ‘Meet and Greet sessions’. 
• Liaison with primary care via shared care agreements and for other complex discussions. 
• ‘Ready, Steady, Go’ assessments. 
• Build rapport with patients and guardians and liaise with the wider MDT. 
• Supporting the database collection and clinical governance of the service. 

Aspirations for service post COVID-19 pandemic 

The service launched just before the pandemic and has had to rapidly change and evolve.  However, there are a few key aspirations we hope to further develop in the next 12-24 months: 

1. Obtain specific funding from specialist commissioners to expand service further – including referrals from primary care with an appropriately attached tariff. 
2. Fully integrate research into service – this has already started but by utilising our expanding database resources we will be able to demonstrate outcomes over longer period of times, including how patients cope post transition in adult care.  Collaboration with other transition centres nationally will be important for multi-centre collaborations. 
3. Develop a specific endoscopy suite for AYP patients, on specific lists – this is in order to standardise and ensure best practice guidance on performing endoscopies on AYPs is followed (something that is under review currently by the BSG AYP, Endoscopy and BSGPHAN society committees).  We hope the new RLH hospital (which is due to open in August 2022) will help facilitate this. 
4. Parallel rooms of AHPs working in transition clinic – in the post pandemic period some parts of the service will move to in person to face to face consultations.  With the development of the keyworker role and other AHPs being involved in patient care, we hope to ultimately have a model of parallel rooms seeing patients aged 14 and above occurring simultaneously with a paediatrician present in clinic on a weekly basis. 
5. We hope to use our experiences to contribute to further iterations of the BSG Transition Guidelines to involve care locally and nationally. 

Why we feel the new NW of England/Liverpool AYP transition service should win the CSSC Prize? 

We feel we should win the CSSC prize because: 

• We have developed a new, successful and robust service for AYP patients will all chronic GI diseases based upon BSG national guidance (3) and UK IBD standards (7) as the gold standard of care. 
• This novel service is the first of its kind in the North West of England and similarly (to the best of our knowledge), the first of its kind in its coverage of all chronic GI diseases that occur in AYP patients. 
• The service has provided superb support for AYP patients in the region in the first 12 months as shown by KPIs and direct patient feedback and key stakeholders in the charitable sector (8). 
• The service has adapted very rapidly to the enforced changes brought in by the COVID-19 pandemic and enabled the use of technology both to engage patients and carers, but also NHS staff.
• All of the above has been achieved without specialist commissioning or trust funding, but because there is a recognition that excellent transition are required to help improve health related inequalities in the region but also to ensure a brighter future with better outcomes for AYP patients with chronic GI diseases – in essence we hope to “reap what we have sown” in the future.

References

(1) Healthcare and life expectancy inequalities in UK. Office for National Statistics. https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthandlifeexpectancies/bulletins/lifeexpectancyforlocalareasoftheuk/between2001to2003and2017to2019 Accessed: 1st July 2021. 

(2) Transition from children’s to adults’ services for young people using health or social care services. NICE guideline [NG43]. https://www.nice.org.uk/guidance/ng43 Accessed: 1st July 2021. 

(3) Brooks AJ, Smith PJ, Cohen R, et al. UK guideline on transition of adolescent and young persons with chronic digestive diseases from paediatric to adult care. Gut 2017; 66:988-1000. 

(4) Brooks AJ, Smith PJ, Lindsay JO. Monitoring adolescents and young people with inflammatory bowel disease during transition to adult healthcare. Frontline Gastroenterology 2018; 9:37-44. 

(5) Mackner LM, Greenley RN, et al. Psychosocial issues in paediatric inflammatory bowel disease: report of the North American Society for Paediatric Gastroenterology, Hepatology, and Nutrition. J Pediatr Gastroenterol Nutr. 2013; 56(4):449-58. 

(6) Transition and patient empowerment Innovation, Education and research Network (TIER). https://www.readysteadygo.net/ Accessed: 1st July 2021. 

(7) Kapasi R, Glatter J, Lamb CA, et al. Consensus standards of healthcare for adults and children with inflammatory bowel disease in the UK. Frontline Gastroenterology 2020; 11:178-187. 

(8) Case study: New psychological service, Liverpool University Hospitals NHS Foundation Trust. IBD UK website. https://ibduk.org/resources-for-ibd-services/case-studies/case-study-new-psychological-service Accessed: 1st July 2021.