Report Launch Feb 2022: Improving transitions to adult care for young people living with a rare disease

Report Launch Feb 2022: Improving transitions to adult care for young people living with a rare disease

Costello Medical, Cambridge Rare Disease Network and Beacon launched a new report in March 2022 exploring the transitions process for young people living with rare conditions.

In recent years, advances in the diagnosis and treatment of rare diseases have led to improved life expectancy and quality of life for many patients. Consequently, children with complex and chronic rare diseases, who previously may not have survived past infancy, are now expected to live well into adulthood. The increasing number of patients transitioning from paediatric to adult care has placed growing pressure on healthcare systems to develop age-appropriate services that ensure continuity of quality care.

Characterising Key Challenges 

While improving transition pathways is an area of increasing focus, the rare diseases community continues to face substantial challenges when it comes to transitioning from paediatric to adult services. As such, there is a need to identify and characterise key challenges, as well as potential solutions, in order to inform further policy change and improve the transition processes for patients with rare diseases.

In response to this need, Costello Medical in collaboration with Cambridge Rare Disease Network [CRDN] and Beacon held a series of focus groups throughout 2021 and a round table discussion on 15th October 2021 comprising of healthcare professionals, patients and caregivers, patient advocates and policy experts.  This diverse group shared their insights and experiences of transition services at different hospitals in Cambridgeshire and surrounding regions. The report, titled ‘Improving transition from paediatric to adult care for young people living with a rare disease’ recently published, discusses the current challenges associated with the transition of young adults with rare diseases into adult healthcare services, we well as identifying potential solutions and clear recommendations for action.

In the UK Rare Diseases Framework published Jan ‘21, it is recognised that we must address “the challenges in ensuring continuity of care across paediatric and adult services” to reduce the burden of care on patients and their families.  Transition has been described as “the purposeful and planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult orientated healthcare systems”. But were their experiences planned & purposeful? Within the report, young people living with #RareDiseases share their lived experiences and tell us what was done well, what could be done differently and how the process could be better.

Some of the key challenges outlined were the definition of transition, a lack of coordinated care, insufficient transparency and communication, the timing of transition, changing roles of parents, limited consideration for wellbeing, a fear of moving to adult care, and lack of age-appropriate care.

“Despite attempts to initiate conversations about transition as a teenager, my transfer into adult care came about abruptly, when I was admitted to the A&E department as a young adult. This was shortly after my primary paediatric doctor retired.” Katie also admitted, “I still don’t know who I’m really supposed to go to for what issue.”

Katie Callaghan

Founder , Cards for Bravery & young adult living with a rare condition

Rare-Diseases-Paediatric-to-Adult-Care-Transition_Roundtable-Report_1

Solving the Problem

What was most exciting and filled us with hope for a better future was the solution focussed discussion which took place next.   We heard of great practice in action at Colchester NHS where they adopt the #ReadySteadyGo transitions programme and have a Youth Worker who supports holistically, helping young people share experiences and plan ahead in an age appropriate, engaging way.

“Encouraging young people to share their experiences with their doctors can be powerful, and have a bigger impact.”

Rachel Fletcher

Hospital Youth Worker, Colchester Hospital

We were also impressed by the Teenage and Young Adult (TYA) ward at Addenbrooke’s Cambridge University Hospital which offers space for patients aged 14 to 24 for treatment of cancer. Young people helped with its design to create a less daunting stepping-stone in transition from paediatric to adult wards. The ward provides a focal point for young adult care, bringing together a multidisciplinary team (MDT) of clinicians, youth workers, social workers and mental health support workers. This MDT structure is important in determining the right time to initiate transition for each individual, based on factors such as developmental age and family structures. Everyone who works in the ward engages with the young adults and communicates with them about their future aspirations and goals, rather than just their illness. This environment has been invaluable in providing patients and their families with the necessary support throughout the transition from paediatric to adult care.

Based on the solutions discussed as part of the focus groups, a set of four key recommendations were compiled and it is hoped that they will help to improve the transition from paediatric to adult care for young people living with rare diseases in the Cambridgeshire region and beyond.

You can find the full report here. Please take time to read, digest and share so that together we can get transitions right for young people living with rare conditions.

transition to adult care summary of recommendations

UK Government Launches Rare Diseases Framework 2020

UK Government Launches Rare Diseases Framework 2020

The UK Government launches the Rare Diseases Framework 2020

On the 9th Jan 2021, the Department of Health and Social Care published the UK Rare Diseases Framework, which replaces the previous UK Strategy for Rare Diseases published in 2013.

You may recall that back in Sept 2019, we held our RAREsummit event at the Wellcome Genome Campus in Cambridge.  At this event Baroness Nicola Blackwood, then government minister overseeing the new framework development, delivered a talk and called for the rare disease community to take part in the ‘National Conversation’ a survey ensuring patient and advocates were not only at the centre of designing the UK Rare Disease Framework, but also in shaping the direction for rare disease policy more broadly in the UK moving forward. You can watch her presentation here.

The survey aimed to identify the major challenges faced by those living and working with rare diseases, and received an amazing 6,293 responses, including from over 5,000 patients, families and patient organisations. This impressive response rate has enabled the UK government and the devolved administrations of Scotland, Wales and Northern Ireland to better understand what challenges were faced consistently across the community, and where differences lay between respondent groups. This information has guided the design of the Rare Diseases Framework around four key priorities:

1

Helping patients get a final diagnosis faster

and for research into previously unrecognised conditions to help identify and diagnose new rare diseases.

2

Increasing awareness of rare diseases among healthcare professionals

and increase the use of genomic testing and the array of digital tools available to support quicker diagnosis and better patient care.

3

Improving coordination of care 

Living with a rare disease often means having to face appointments with multiple different specialists across different hospitals, all in addition to accessing services such as GPs and social care. All rare disease patients should experience better coordination of care throughout their patient journey.

4

Improving access to specialist care, treatments and drugs

Very few rare diseases have established treatments, but where they do exist, access to these often-innovative therapies can prove difficult. The framework hopes to improve access to specialist care, treatments and drugs for rare disease patients across the UK.


The survey also identified several cross-cutting issues, which have also been included in the Framework as underlying themes. These are:

Continuing to champion the patient voice;

Pioneering research, so that we can harness the potential of cutting-edge science and translate outcomes into frontline clinical care.

Using digital tools, data and technology to improve efficiency, patient experience and research.

Maximising collaboration with the rare disease community in the UK and across the world to drive better outcomes for patients.

Ensuring alignment with wider policy so that rare disease issues are recognised across government.

Now that the framework is published, the focus will turn to develop the action plans to address these priorities, so we can drive real change for rare disease patients and their families. Action plans will be drawn up from each of the four UK nations, which will outline how each nation will deliver against the priorities and underlying themes in their respective health systems. It will be vital that the rare disease community is consulted, involved and listened to throughout development of these plans.

During the cross-sector hackathon as part of our RAREsummit19, teams thrashed out ideas for how they felt we might deliver on the priority themes in the Framework. We created a report to showcase some of these innovative solutions which can be viewed here. We’ll be sharing these ideas with the Dept for Health and Social Care and the teams involved in the action plan development.

Lord Bethell of Romford, Parliamentary Under Secretary of State for the Department of Health and Social Care, now leads on the Rare Disease Framework as the successor to Nicola Blackwood.

UK Rare Diseases Framework 2020
DIGITAL - CRDN Hackathon Report_6 December 2019 resize

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