We are pleased to announce that Laurence Woollard is joining NHS England’s specialised blood disorders Clinical Reference Group (CRG) in a personal capacity as one of two Patient and Public Voice (PPV) Partner roles.
This will see Laurence sit alongside a select number of multidisciplinary clinical experts involved in the care of people living with inherited and acquired bleeding disorders as well as a representative of The Haemophilia Society. The specialised blood disorders CRG and membership oversee the development of clinical commissioning policies, service specifications and quality standards. The term will last for a minimum of 3 years.
About the specialised blood disorders CRG
CRGs serve as the principal source of clinical advice to specialised commissioning within NHS England and are a key mechanism in the delivery of high-quality specialist services. Specialist services are those that support people with a range of rare and complex conditions. The specialised blood disorders CRG covers conditions such as: haemophilia, von Willebrand disease, platelet disorders and Thrombotic thrombocytopenic purpura, among others. It forms part of the blood and infection national programmes of care (NPoC); one of six NPoC boards which coordinate and prioritise work across the range of specialist services.
The lead commissioner for specialised blood disorders is Will Horsley, who is a pharmacist by trade and has worked for the NHS for over 20 years. He commented:
“The blood disorders CRG has always been a strong and active group due to the enthusiasm and experience of those we have been fortunate to work with – our CRG members. Since I became lead commissioner in 2016, we have overseen the introduction of extended half-life factors, the first non-factor therapy and soon gene therapies for haemophilia. There have also been changes in the NHS during this period that continue to put pressure on expenditure and service capacity.
We need a strong CRG to champion these services and steer the clinical and commissioning functions to best serve patients within the available resources. The CRG now has its first opportunity in over a decade to rewrite the national service specification for haemophilia and other inherited and acquired bleeding disorders. This will be the core focus for the CRG over the next 12 months. It’s an exciting and innovative time for the CRG!”
The current Chair of the blood disorders CRG and National Speciality Advisor is Dr. Susie Shapiro, a Consultant Haematologist at the Oxford Haemophilia and Thrombosis Centre. She added:
“I’m really looking forward to working closely with all our CRG members to continue to do our best to ensure that new therapies are available for people living with bleeding disorders, whilst maintaining access to good comprehensive care. Our patient representatives are a crucial voice within the CRG, which also includes physiotherapy, nursing and public health representatives.
I’m really grateful for everyone’s enthusiasm and willingness to be a part of the group. I’m also delighted that this year we will have the opportunity to review the national service specifications for bleeding disorders. At the heart of this process will include stakeholder input from across the UK, with the aim of ensuring equitable access to high-quality care.”
The role of PPV Partners on the CRG
NHS England has a legal requirement in its commissioning arrangements to actively involve those who use and care about its services. PPV Partners bring unique perspectives and insights into its work, whether through their lived experience as a patient/carer or as a member of a community with particular health and care needs.
Laurence will be engaging in the blood disorders CRG through the lens of someone with lived experience of severe haemophilia and as an advocate within the bleeding disorders community. As noted, The Haemophilia Society (THS), as the UK-wide charity for all those affected by a genetic bleeding disorder, will fulfil the other PPV Partner role.
Debra Morgan, Head of Services at the THS, remarked:
“The Haemophilia Society welcomes its reappointment as a patient representative on the specialised blood disorders CRG. It’s vital that the views and needs of all the entire bleeding disorder community are communicated at the CRG, whether around access to treatments, provision of care or delivery of services. This CRG is populated with very active members and has been open and encouraging of the patient voice. We look forward to continuing this work as we endeavour to rewrite the national service specification this year, which is crucial to generating optimal patient outcomes.”
Laurence has prior experience as a PPV Partner, having served on NHS England’s Advanced Therapy Medicinal Products (ATMP) Working Group, which now operates as ATMP Engage. Laurence remains a member and will be supporting the blood disorders CRG as part of his other priority commitments in and outside of his director role of On The Pulse.
To find out more about the specialised blood disorders CRG and its members, please click here.
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