Haemochromatosis UK Strategy 2023-2028

Our strategy was formed from lots of discussions with members, trustees, friends, clinicians, staff and the wider GH community, culminating in 2-day strategy workshop in Cambridge in October 2022.

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Our strategy comprises several aspects, including our vision, mission, values and core strategic objectives.

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Our vision

 

Our vision is a world in which iron overload becomes a thing of the past, a world in which genetic haemochromatosis is diagnosed and treated promptly, before any damage is done.

 

We seek a world where everyone affected by genetic haemochromatosis has access to high-quality care and support - and the information and resources necessary to improve their quality of life and live well with the condition.

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Our mission

 

Our mission is to stimulate research, to ensure timely diagnosis and that anyone affected by genetic haemochromatosis receives the best information, treatment, support and care. We are the voice of people affected by genetic haemochromatosis; we will be powerful advocates for our community.

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Strategic objectives - overview

 

We will fulfil our mission by educating healthcare professionals and the public at large. We will strive to support and encourage people affected by GH, whether newly diagnosed or further along their GH journey irrespective of their age, gender, ethnicity, geography or economic circumstances. We will be active collaborators and reliable delivery partners - engaging with the NHS, the private medical sector and professional bodies to address the gaps in nationwide protocols/care pathways to address the unmet needs in the diagnosis & treatment of GH. We will stimulate research into the condition and its impact on people.

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Our core strategy

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#EarlyDiagnosisSavesLives

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• Aim: Ensure the timely diagnosis of people at risk of GH* because early diagnosis saves lives

• By:

  • Improving access to genetic testing

  • Improving access to diagnostic services to achieve timely diagnosis#

  • Improving public awareness of symptoms

  • Improving clinician awareness of symptoms & care pathways

  • Increasing NHS investment in GH care pathways

  • Developing and promoting technological solutions to improve diagnosis (eg MRI, AI, ML)

• Objectives:

  • Provide cascade/family genetic testing services

  • Provide population screening services

  • Lobby elected representatives and policy makers to deliver changes beneficial to the GH community

  • Run scaled public awareness campaigns (including HAW)

  • Deliver clinician training across community, primary and secondary care settings

  • Participate in clinician conferences/events

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* Anyone, including children and young people as well as adults, including all known types of GH (types 1–4) and novel / undiscovered genetic causes.

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#Support people at risk of GH

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• Aim: Provide evidence-based, clinically safe information and support to anyone affected by GH to help them/their families live well with the condition

• By:

  • Improving access to reliable information resources for patients and their families

  • Expanding access to support services, including digital services

  • Delivering support services in response to NHS unmet needs

  • Developing consistent care pathways/guidelines for excellent GH diagnosis & care

• Objectives:

  • Publish information resources for patients (in print, online, app)

  • Run helplines to help people with questions or worries

  • Provide specialist nursing/counselling services to people at risk of GH

  • Provide clinical services in partnership with or independently of NHS for unmet needs

# At risk now or in the future; with or without a confirmed diagnosis of GH/iron overload.

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#Educate healthcare professionals

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• Aim: Provide evidence-based information and training to healthcare professionals supporting people affected by GH

• By:

  • Increasing clinician awareness of GH and the risks of resulting ill-health

  • Improving access to clinician information resources

  • Advocating for best practice care pathways across healthcare settings

  • Campaigning for improvements in relevant NHS services

• Objectives:

  • Commission relevant clinical / medical research*

  • Influence, develop & promote best practice guidance for GH clinical pathways#

  • Deliver clinician training across community, primary and secondary care settings

  • Initiate and/or run clinician conferences/events

  • Extend the range/promotion of education to allied professions (eg dentist, physio etc)

  • Advocate for GH training to be provided to all trainee medics and nurses in UK through medical school

  • Promote holistic care by NHS for people affected by GH (to include mental, physical health)

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* Including epidemiological, health economics, risk/statistics research as well as traditional “medical research”.

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# Including but not limited to Venesection Best Practice Guidance, RCN-accredited eLearning, RCGP-accredited eLearning.

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#Stimulate medical research* into GH

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• Aim: Find answers through increased, evidence-based qualitative and quantitative research into GH

• By:

  • Increasing research effort into understanding the causes and impact of GH

  • Improving the evidence base that informs our community support & clinician education

  • Driving collaborative campaigns for better care pathways, standards and protocols

  • Reflecting the “lived experience” of GH in all research we sponsor, undertake, support or endorse

• Objectives:

  • Develop and own our own research datasets

  • Commission relevant clinical / medical research* from third-parties

  • Undertake our own research

  • Develop & promote best practice guidance for GH clinical pathways#

  • Run/attend research-focussed events to stimulate interest in GH and facilitate collaborations

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* Including epidemiological, health economics, risk/statistics research as well as traditional “clinical/medical research”.

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# Including but not limited to Venesection Best Practice Guidance, RCN-accredited eLearning, RCGP-accredited eLearning.

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#Raise public awareness of GH

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• Aim: Drive awareness of GH among the general public and healthcare professionals

• By:

  • Campaigning to reach and engage communities at risk with information & advice

  • Engaging with healthcare professionals (across settings) about GH

  • Improving awareness of GH, its symptoms and consequences

  • Improving access to reliable public information resources across multiple channels

• Objectives:

  • Run scaled public awareness campaigns (including HAW)

  • Publish information resources for patients & healthcare professionals

  • Deliver population screening for communities at risk

  • Engage with elected representatives through cross-party groups and other collaborations

* Via primary/secondary care and directly.

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Our values:

We will strive to achieve our goals without compromising on our values:
 

• People first

  • We act as the voice for change and improvement in the diagnosis and care of those affected by genetic haemochromatosis

• Living well

  • Our work supports living well with genetic haemochromatosis with a focus on good mental and physical health

• Health equality

  • We champion healthcare that is inclusive, accessible and non-discriminatory

• Clear communication

  • We make sense of the science and are clear where evidence exists and where it does not

• Collaborative & co-operative

  • We bring people together to solve problems and help those affected by genetic haemochromatosis

• Responsible & accountable

  • We are open and transparent in our work as an independent charitable patient body

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