Charity Objectives //
To relieve the needs of patients, families and carers affected by Autoinflammatory conditions in the UK by:
(a) Providing information, support and advice.
(b) Raising awareness of Autoinflammatory conditions.
(c) Providing data when supporting research in relation to Autoinflammatory conditions.
For all UK patients, directly or via parents and carers, to have genetic testing and reach a diagnosis for Autoinflammatory Conditions.
For UK patients, parents and carers to be able to access the right treatment through the NHS
For the public, carers and medical professionals to be well educated about both the emotional and physical effects of Autoinflammatory Conditions.
For all patient care to be well coordinated
For all patients, parents and carers to be able to access relevant Disability/ Sickness benefits for financial support such as Disability Living Allowance/ Personal Independence Payment, Employment and Support Allowance and Carers Allowance.
Key issues affecting patients...
- Struggling to access medical support from specialists in London etc. for testing and diagnosis
- Struggling to access the Biological Treatments due to licensing problems through the NHS and funding
- Feel isolated due to the rarity of their conditions
- Feeling misunderstood as some symptoms are not always visible so it’s hard to make others understand what patients are going through
- Very little emotional support in dealing with such rare conditions and some patients are finding that a crisis must happen before they receive any psychological support from NHS or Charities such as Cognitive Behavioural Therapy, Psychotherapy and support from psychologists
- Access to Social Security benefits (DLA/PIP and ESA) being denied due to a) the lack of understanding for the conditions, b) because some symptoms vary each day/ week/ month
- Lack of communication between medical professionals involved in patient care. Patients are finding that they should take a huge responsibility to remember to share all the relevant information with the right consultants.
What are our aims?
A safe space community for patients, parents and carers both diagnosed and undiagnosed with Autoinflammatory Conditions within the UK.
To signpost and enable discussions amongst patients, parents, carers and the public around finding genetic testing for the conditions and reaching a full diagnosis as early as possible.
To signpost and enable discussions among patients, parents, carers and the public around accessing treatment through the NHS.
To raise awareness of Autoinflammatory conditions within the UK by sharing patients’ stories via social media, blogging, websites and potentially leaflets etc. Once funds are sufficient, then a website and leaflets will be designed. Leaflets will be given to hospitals around the UK to inform patients of our group.
An annual event where patients, parents and carers can come together to meet away from social media, discuss their most recent experiences and their next steps. Also, inviting medical professionals to talk about their latest research