MEDICAL

Care pathways & Adult OI Networks in the UK

Written by Patricia Osborne CEO of Brittle Bone Society and Professor Kassim Javaid

When adults with rare bone conditions turn 18 they mostly have no dedicated adult clinics or services to transition to. Because of an initiative from the BBS, there is now an official Rare disease collaborative network (RDCNs) established for adults with different rare bone conditions, including OI. In addition they have developed a care pathways document, which is aimed at the whole OI community from specialists, generalist in hospital and primary care, patients and their families to clarify the minimum standard of care that patients with OI can expect wherever they live in the UK.

WHO ARE YOU (BOTH) AND WHAT IS YOUR RELATIONSHIP TO OI?

Woman with dark hair and man with purple Shirt
Prof Kassim Javaid and Patricia Osborne CEO of BBS

I am Patricia Osborne, Chief Executive of the Brittle Bone Society (BBS). I manage the UK charity, working with individuals and families with OI. Prof. Kassim Javaid from the University of Oxford is the Chair of the BBS Medical Advisory Board (MAB).

TELL US ABOUT THE RDCN ADULT RARE BONE NETWORK:

The Rare disease collaborative networks (RDCNs) are an important part of the National Health Service (NHS) architecture initiated by NHS England and NHS Improvement to improve care and support for patients with rare diseases.

Prof Javaid and other HCP colleagues decided to submit an application to establish a RDCN for adults with rare bone diseases and this was fully supported by the BBS and other rare bone groups. There are now 20 networks approved and monitored by the NHS, with the Adult Rare Bone, being the latest. 22 x NHS Hospital Trusts have signed up to the network, with more in the wings. The network includes approximately 35 – 40 healthcare professionals (HCPs).
The priority areas of existing RDCNs include: (across the UK)

• Raising awareness of the rare disease
• Improving co-ordination of care
• Sharing of expertise and best practice
• Establishing a disease registry to improve the understanding of the epidemiology of the rare disease
• Research on treatment options and diagnostics
• Establishing a support network for patients and families, including co-ordinated transition from paediatric to adult services.

To achieve this the goal of RDCN for Adults with Rare Bone Diseases is to

• Deliver virtual national and supporting regional multidisciplinary structures for all clinicians caring for adults with rare bone diseases
• Develop four rare disease patient pathways that will include minimum clinical indicators both generic and disease specific and resources for professionals & patients.

At the RDCN Launch Event – Prof Javaid, Trustee of the BBS Thines Ganeshamoorthy, Patricia Osborne, and patient representatives & colleagues from various groups involved in the new RDCN , Oliver Gardiner XLH UK, Heather Delaney FDDSUK, Helen Bedford-Gay.

Seven People, one of them in a powered wheelchair
At the RDCN Launch Event – Prof Javaid, Trustee of the BBS Thines Ganeshamoorthy, Patricia Osborne, and patient representatives & colleagues from various groups involved in the new RDCN , Oliver Gardiner XLH UK, Heather Delaney FDDSUK, Helen Bedford-Gay.

HOW IS THE NETWORK MANAGED?

A steering committee is responsible for implementation and management of network, including prioritizing deliverables, assigning tasks, organise an annual meeting, reporting to the NHS and be a point of contact for other organisations including from patient groups. A key essence for the RDCN for Adults with Rare Bone Diseases is patient co-production. We have therefore integrated patient engagement at every level of the RDCN governance. BBS Trustee Thines Ganeshamoorthy (left of the photo) is appointed co-chairman of the Steering Group in year one of the project alongside Prof Javaid.

The NHS England will provide ‘light touch’ support to RDCNs. Each network is allocated a named commissioning manager. RDCNs is also assigned an NHS England approved logo which they can use on publications and correspondence with patients, patient groups, other stakeholders and when applying for research funding for example. The establishment of an RDCN is not accompanied by additional funding; set up and running costs are not reimbursed.

WHAT ROLE DOES THE BBS HAVE?Cover of book with title "adult rare bone network"

BBS hosted the formal launch event alongside other patient support groups in London November 2023. The BBS also provide initial resources, staff time and have committed to providing back office support including joint secretariat duties alongside Metabolic Support UK. The network also involves an expert group of co-applicants and friends whose members include reps from: XLH UK, Fibrous Dysplasia Support UK, FOP, and Softbones UK – HPP (informally). So far BBS have helped co-ordinate meetings online with HCP’s, steering groups etc, to help formalise due governance procedures and similar. Metabolic Support UK have kindly agreed to host a map finder for the network and other useful info on their website. BBS is hosting OI specific information on our website and other groups will do likewise.

WHY RARE BONE AND NOT JUST OI?

While traditionally RDCN have been single disease focused, the BBS and clinical community recognised the aims and objectives of the RDCN were relevant across rare bone diseases. Working collaboratively with the other patient groups made sense as those groups all share the same unique set of highly skilled healthcare professionals/clinicians. Working in a larger group also gives a stronger voice for better understanding and future care plans for those with rare bone conditions.

TELL US ABOUT THE OTHER INITIATIVE – THE CARE PATHWAYS

The BBS have long campaigned for a formal set of clinical care guidelines for OI to be put in place. For some years we have consulted and worked with leading healthcare professionals in the UK and the OI community to gather strong evidence and data to help shape that missing formal guidance. The care pathways document is aimed at the whole OI community from specialists, generalist in hospital and primary care, patients and their families to clarify the minimum standard of care that patients with OI can expect wherever they live in the UK.

In 2020 BBS were given an award in ‘care’ and part of the prize was a chance to work with the company WPP (now called VMLYR Health). This included access to pro bono support in ‘project managing’ to develop a formal set of care guidelines/pathways. We benefitted greatly from this and went on to purchase (at much reduced rates) expertise in project management from VMLYR Health to conduct the collation of the documents for Pathways for severe OI. Prof Javaid agreed to lead on this, and our formal process began.

Expert working groups with individuals with OI worked alongside BBS staff to co-develop the content and format, including which areas of health/topics that should be covered in the best practice pathway document. The final pathway draft was completed and presented at the 2023 BBS family day. Once all topics were agreed we then invited 22 healthcare experts to input into the document. It is now in its final stage of being written up into a paper for publication including a Patient checklist. We are aiming to submit for publication by the summer of 2024. BBS have now embarked on the 2nd phase of work in care pathways which will include similar documents for adults with all other types of OI.

WHAT ARE THE FURTHER PLANS?

Creation, completion and publication of formal care pathways for both severe and all other types of OI, together with the new NHS RDCN network, heralds an exciting step forward for OI in the UK. To grow understanding of both management of care of those with OI alongside recognised pathways can only mean that those with OI will receive better treatment, and lead to a better understanding and better health outcomes for the OI community. BBS also plan to compliment this programme with webinars and members will be involved throughout.

This article was first published in OIFE Magazine 1-2024.

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