Families and professionals come together to discuss transition

Over 100 people attended the latest Climb conference; Transition and Adult Care, which took place on Saturday 8th October 2016 at The Studio, Birmingham.

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We understand that the transition from paediatric to adult care is a worrying time for patients and their families, so we developed a full programme to open discussions and help make this process as smooth as possible.

The main conference was introduced by Climb’s Executive Director Lindsay Weaver, who outlined the aim of the day; to bring together patients, families and professionals under one roof to discuss how transition affects all parties.

We welcomed a number of professional speakers, who discussed a wide range of topics such as:

  • The UK strategy for rare diseases and transition
  • The differences between paediatric and adult care
  • Bridging the gap to independent living

We were also fortunate enough to hear from 16 year old Dominic Blore-Rimmer, who was diagnosed with MCADD two years ago, and Alex Aebischer whose son Carlo has Citrullinemia.  Both speakers discussed their personal experiences with transition and answered a number of questions.

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In our break-out room, we had a separate programme for teens and young people.  Muscular Dystrophy UK Trailblazers opened the session with an inspiring talk about how young people can turn living with a long-term condition into a positive by providing a voice and getting involved with campaigns.  This was followed by a fantastic insightful talk by Thomas Wadsworth, a young person living with CAH who shared his experiences and answered lots of questions.  A lively cookery demonstration by Nutricia showed the group how to make quick and tasty low protein dishes such as stuffed peppers and apple crumble.  The afternoon workshop was led by Footsqueek and included fun, creative activities designed to explore the feelings of young people living with complex conditions, and their needs.  The output from this workshop will inform the development of a fabulous video resource for teens by teens, so watch this space!

Feedback following the conference painted a picture of families at differing stages of the process, and with varying experiences.  Some felt reassured by hearing of the processes that should be in place:

“I had felt nervous about the transition process but I now have a better understanding of what should happen, so I now know what to expect and what to ask for if it doesn’t happen.”

“We have been through transition, not very positively unfortunately, but it is reassuring to know that things are changing.  We found Dr Lachmann’s explanations very helpful.”

“I feel encouraged that there are good processes in place to transition my children to adult services.”

While some highlighted the areas where improvement is needed:

“I found all speakers very relevant and interesting.  As they are all clearly conscientious professionals, the care they describe is exceptional.  Sadly this is not the case for our experience and therefore just presented a ‘utopia’ scenario that we can only wish for.  I still have no clue on how to help my son.”

“I feel generally positive about the process particularly as we live in London.  It seems unfair that there is a ‘postcode lottery’ element to the provision of adult services for Inherited Metabolic Disorders.”

While it is clear that there is a way to go before the process is consistent across all regions, we hope that the day helped to open the lines of communication between families and professionals to equip them for, and empower them to improve transition.

Our thanks to all of our speakers who generously contributed their time and expertise to help deliver an insightful and valuable conference.  The presentations from the speakers can be found here:

UK strategy for Rare Diseases – Farhana Ali, Genetic Alliance UK

An Introduction to Transition – Robin Lachmann, UCLH

Benefits and Practical Advice – Muscular Dystrophy UK

Good Practice Where no Adult Services Available – Charlotte Dawson, University Hospital of Birmingham

Introduction to the Complex Multiple Impairment Team – Julie Howard, Leeds & York Partnership NHS Foundation Trust

 

We would also like to thank our sponsors and supporters:

nutricia-logo

Nutricia has been a founder within the Metabolic category for 120 years. At Nutricia we put the needs of people at the heart of our business. Our sole purpose is to pioneer nutritional discoveries to help people live longer, healthier lives.

We offer a wide range of protein substitutes and low protein foods for the dietary management of Metabolic Conditions. Our unique product range is tailored to guide patients through every step of life. To meet existing and emerging patient needs, we have a broad portfolio of support services. Through our Nutricia Homeward Metabolics and Specialist Service, we deliver nutritional feeds directly to patient’s homes at a convenient time. We also have extensive online resources, including our new website lowproteinconnect.com, where recipes, news articles and stories from real patients can be accessed. Our social media pages also provide patients with opportunities to connect with others on a low protein diet. We organise a variety of events throughout the year, all over the UK and Ireland  to allow patients to come together and enjoy a fun day out, as well as find out about the latest innovations and key updates in Metabolics.

 

Horizon_Pharma_logo

Horizon Pharma plc is a biopharmaceutical company focused on improving patients’ lives by identifying, developing, acquiring and commercialising differentiated and accessible medicines that address unmet medical needs. The Company markets nine medicines through its orphan, primary care and rheumatology business units. Horizon’s global headquarters are in Dublin, Ireland.

 

ultragenyxPH-CMYK

Ultragenyx Pharmaceutical Inc. is a clinical-stage biopharmaceutical company committed to bringing to market novel products for the treatment of rare and ultra-rare diseases, with a focus on serious, debilitating genetic diseases.  Ultragenyx is studying investigational UX007, a purified form of a specially designed synthetic triglyceride compound, for the treatment of Long Chain-Fatty Acid Oxidation Disorders (LC-FAOD), including Very Long Chain Acyl-CoA Dehydrogenase (VLCAD) Deficiency; Long-chain 3-hydroxy-acyl-CoA Dehydrogenase (LCHAD) Deficiency; Trifunctional Protein (TFP) Deficiency; Carnitine Palmitoyltransferase (CPT I or CPT II) Deficiency.  We are currently conducting a survey to understand how LC-FAOD impacts people’s lives. If you have LC-FAOD or care for someone with LC-FAOD, we invite you to take the survey at www.FAODsurvey.com.

At Ultragenyx, the patient advocacy team is passionate about educating and supporting you: patients, families and caregivers affected by rare and ultra-rare diseases.  We understand the challenges facing many rare disease communities, including a lack of information and treatment options. The advocacy team works with patient groups to provide communities with educational materials, and to ensure patients’ needs are shared within our company to guide our work.  To find valuable educational resources, hear from others who live with fatty acid oxidation disorders & other rare diseases, and learn more about our commitment to the rare disease patient community, please see visit our new Ultragenyx Patient Advocacy website, www.ultrarareadvocacy.com.

 

vitaflo logo

For over 20 years, Vitaflo has been at the forefront of developing innovative specialised clinical nutrition products for managing inborn errors of metabolism (IEM).  We work in partnership with healthcare professionals, children and adults alike in order to create products that combine the best of cutting edge research with the lifestyle demands of modern living, ensuring the most acceptable products are available.

We are very aware that we live in an ever-changing world and we strive to evolve in order to meet your needs and to continue to develop products which offer choice and support in complying with a restrictive diet.

 

students4logoStudents4RareDiseases is an organisation formed by five medical students who initially set up The Bart’s and the London Society of Rare Diseases.  Our aim is to raise awareness and inspire students to think outside the box, and consider rare diseases – by educating them.  We understand that we can’t educate on every rare disease, but with enough information we can encourage a rare disease to be considered.  Our message to students is that although each diseases is rare, together they are common with 1 in 17 people being affected in their lifetime.  We are always looking for interested students and speakers.

Sobi

OE White