All posts by Laurence Woollard

Laurence Woollard

About Laurence Woollard

Laurence Woollard is a 26-year old professional with severe Haemophilia ‘A’. He currently volunteers as a Youth Ambassador for the Haemophilia Society UK and is a patient representative for his Haematology Centre at the Royal London Hospital. Laurence is passionate about raising awareness of Haemophilia and providing peer-support to young Haemophiliacs with managing their condition.

EPF Youth Group Annual Spring Meeting

YG_mtg_blogOn 19th and 20th March, the EPF Youth Group gathered in Brussels for its two-day Spring Meeting to discuss key issues, such as capacity development, preparatory work for the Roundtable on Transition to Adult Care and for the Youth Group’s participation at the European Youth Event in May 2016 (#EYE2016).

First on the agenda was an assessment of the capacity development tasks implemented in 2015. The Youth Group acknowledges the advancement and how they feel stronger and self-aware but also took the opportunities to share their views on weaknesses, such as the commitment of members, plus how to be more active and engaged with the EPF in general. The Youth Group identified some concrete actions to enable a better involvement of current and new members.

 

The discussion moved onto the key topic for 2016: Transition to Adult Care. The lack of information and guidance from healthcare systems, young patients being undermined by healthcare professionals, the risk of discontinuity in adherence to treatments and the sense of the unknown and feeling scared by change were just some of the common themes debated in the room. The Youth Group acknowledged the consultant-patient relationship and diagnoses can differ greatly in adult care compared to children’s care. They stressed there is still lack of legal and financial framework for transition, where clear leadership and the role of a Transition Coordinator need to be defined. Local patient organisations would also be more involved in the transition process, together with the need for peer-to-peer support and specialist care for young patients.

 

Finally, the Youth Group considered their plans for the European Youth Event – a unique platform to exchange ideas and perspectives on youth-related issues – which will take place from 20th-21st May at the European Parliament in Strasbourg. They will be hosting their own workshop in cooperation with the European Multiple Sclerosis Platform titled, “Young Patients: Ready, Brilliant and Able to Work”, which will aim to challenge expectations and change attitudes of employers who view young people with chronic diseases differently.

 

Contact persons:

Valentina Strammiello, Programme Officer, valentina.strammiello@eu-patient.eu

Laurence Woollard, EPF Youth Group Intern, laurence.woollard@eu-patient.eu

EPF Youth Group Roundtable on Transition to Adult Care

YG_roundtable

On 21st March, the Youth Group conducted a roundtable on transition from paediatric to adult care, attended by representatives of patient organisations, health groups, as well as healthcare professionals and delegates of Member States.

The objectives were to raise awareness of the challenges and potential pitfalls that young patients face when transitioning to adult care, to contribute to building a safe support network and to highlight best healthcare practices for the transition process.

The day kicked-off with a role play to show young patients’ perspective of transition and the problems they may encounter. This was followed by a sequence of presentations sharing real-life case studies and project findings on moving into the adult healthcare system, including:

 

  • Models of Child Health Appraised (MOCHA) – an EU-funded project into child health systems in Europe, with a focus on children’s rights;
  • The Milestone Project – an EU-wide study on managing the link and strengthening transition from child to adult healthcare for young patients with mental health conditions;
  • Anna Zaghi – a member of the EPF Youth Group, who spoke about an Italian pilot project on transition for young people with diabetes;
  • The European Society for Paediatric Oncology (SIOPE) – a perspective on transition in paediatric haemato-oncology.

It was apparent that there were similar issues facing young patients when transitioning that need attention, such as the lack of resources and for healthcare professionals to play a bigger role in the process. Young patients want to be considered as whole persons, not just a diagnosis. To this end they should be encouraged to be more empowered and self-manage their condition, whilst healthcare professionals should have a more holistic approach and be trained to better communicate with young patients facing the transition process. What’s more, there should be a greater emphasis on primary care and prevention as well as standardising the responsibilities of Transition Coordinators, profiles that are not often in place in national healthcare systems. The role of coordinators would be to centralise information about young patients in transition to adult care and facilitate a smooth process.

Report and recommendations on transition to adult care will be shared and made publicly available on the EPF website.

 

Contact persons:

Valentina Strammiello, Programme Officer, valentina.strammiello@eu-patient.eu

Laurence Woollard, EPF Youth Group Intern, laurence.woollard@eu-patient.eu

“At age 26, I am able to shape my own therapy”

Trust is a vital ingredient to build successful relationships, both personal and professional ones. This becomes particularly significant when it comes to my Haematology consultants and the difference between suffering from a bleed or not.

I trust my consultants to provide me with good clinical care, tailored to my specific needs, whilst ultimately giving me the freedom to take responsibility for my own health. Whereas the choices were made for me in paediatric care, at 26 years of age I am now able to shape my own therapy with support and guidance from my specialists.

My Haemophilia can be debilitating at its worst but I believe I am best at knowing my body’s limitations and this information can be vital to the health professionals. Patients should be encouraged and feel empowered to intervene proactively in their health care, not just to influence the decision-makers but become the decision-makers wherever possible.

I know that I do not have to deal with my condition alone. As well as my family, I can reach out to others like the UK’s Haemophilia Society and the EHC, who are there to listen and campaign on our behalf. We want and need to be involved with our treatments and to demand improvements for our future. Surely, if you put the patient in the heart of services, then you can ensure a best quality of care is delivered to all.

I am so encouraged by EPF’s Patient Empowerment Campaign; by promoting patients’ rights to choose how they are treated, there can be better understanding between patients and health professionals and a move towards working in harmony.