Table of Contents
AMBITIONS
1. Healthcare
We campaign for equal & timely access to the best standards of treatment & care.
Ambition | Key Objectives | What Will Success Look Like? | |
Healthcare (H) | H1 | Promote and champion the need for earlier diagnosis of Scleroderma | Average time to diagnosis is reduced |
| H2 | Increase equity of access to treatment & care (both pharma and non-pharma) | Patients report improved access to successful treatments |
H3 | Increase access to non-pharmacological interventions/treatments | Patients report improved access to non-pharma treatments | |
H4 | Ensure quality standards* of treatment and care are developed and implemented across the patient pathway | Quality Standards are developed and implemented | |
Key Outcome | People with Scleroderma have equal & timely access to successful treatments and care no matter where they live in Europe, which are delivered to the highest standard. * Quality Standards – are details of requirements, specifications & guidelines that services should consistently meet to ensure: their quality matches expectations, they are fit for purpose & meet the needs of their users. | ||
2. Awareness
We raise awareness of scleroderma across all key stakeholder groups.
Ambition | Key Objectives | What Will Success Look Like? | |
Awareness (A) | A1 | Ensure medical professionals signpost patients to patient organisations | Patient Organisations report increase in patient referrals |
| A2 | Develop specific campaigns and tools to target key stakeholders | Patients report improved levels of awareness across key stakeholder groups Patients report improved access to successful treatments |
| A3 | Develop & implement a policy & public affairs campaign to drive change & improve access to healthcare | |
Key Outcome | | Scleroderma & role of PO’s is more widely recognised and understood. Society knows about Scleroderma, and those with the condition do not feel isolated. | |
3. Education
We enhance the knowledge & understanding of patients, carers and healthcare professionals
Ambition | Key Objectives | What Will Success Look Like? | |
Education (E) | E1 | Ensure that rare diseases, like Scleroderma, are included in the medical curriculum | The condition of Scleroderma is included in the medical curriculum |
| E2 | Improve the education and training about Scleroderma for all healthcare professionals | Patients report improved treatment and care from HCP’s |
E3 | Ensure that Patients are involved in the training programme | A range of resources & education programmes are available to patients to support self-management and co-production | |
E4 | Empower patients & clinicians to co-produce the best treatment and care plan | ||
Key Outcome | | Medical Practitioners and Patients have better knowledge about the condition, treatments and care. | |
4. Research
We support and promote the need for all treatments pharmacological & non-pharmacological.
Ambition | Key Objectives | What Will Success Look Like? | |
Research (R) | R1 | Support scientific studies into the value and benefits of non-pharmacological treatments | Increased number of research projects looking at non-pharma treatment |
| R2 | Promote the value of quality of life research | Patients report access to physical and mental wellbeing therapies |
R3 | Work with industry & academia to ensure patient participation is integrated at all stages | Patient participation is accepted as best practice | |
Key Outcome | | Patients have access to a broad range of treatments, including appropriate physical and mental well-being interventions. | |