Consultation on proposed TSA Strategy 2017-2022.
Have your say.


We are now in the process of refreshing the TSA’s five year strategy to make sure that we are focusing on the things that matter most to people living with TSC and their families.

To this end, please spend a few minutes reading through our proposals for the TSA's priorities for the period of 2017-2022, as below.

Then, please take the opportunity to tell us what you think about our proposals, and anything else you would like to say in relation to our five year strategy, using the online consultation form which you can find by scrolling down to the bottom of this page at the end of the strategy proposal itself.

And for those of you who would prefer to do this via hard copy and post, these documents, including a printed consultation form, will be mailed out to you within the next week to 10 days.

Please note: the deadline for all responses to be submitted is October 31, 2017.

We thank you for your interest and your input.


TSA Proposed Strategy 2017-2022 - for consultation
 
Executive summary
The TSA’s mission is to provide hope for today, and a cure for tomorrow.
Our aim is to make sure that everyone affected by TSC has the care and support they need until we find a cure for the condition.
Over the next five years, our strategy will focus on four key themes, so that we can achieve clear outcomes for people living with TSC and their families.
       

Theme 1. TSCare
Children and young adults with living with TSC are supported at points of transition in their lives.
Adults living with TSC are supported to live full lives and make a meaningful contribution to society.

Theme 2. TSCampaign
People living with TSC and their families can access the treatments and care that they need from the NHS.
People living with TSC and their families can access high quality and well-funded support from health, social care and education services.

Theme 3. TSCure
People living with TSC and their families are supported by evidence-based tools that help them to manage the impact of the condition on their health and quality of life now.
People living with TSC and their families are influencing the development of new disease-modifying treatments to minimise the impact of the condition on their health and quality of life in the future.

Theme 4. TSCommunity
People living with TSC and their families are at the heart of the TSA.


1. TSCare
What are we trying to achieve? (Outcomes)
Children and young adults with living with TSC are supported at points of transition in their lives.
Adults living with TSC are supported to live full lives and make a meaningful contribution to society.

How will we do this? (Outputs)
• Continue to invest in the TSA’s team of advisers across the UK, who provide support and advice for people living with TSC and their families, at points of transition or crisis.

• Work with TSC clinics to ensure that the clinical care they provide for people living with TSC and their families is of a high quality, and joins up with the broader support available across the public sector.

• Provide support and training for individuals and their families at the following periods of transition, working with expert partners from the third sector where appropriate:
o Receiving an initial diagnosis of TSC
o Starting nursery, school or further education
o Moving between children’s and adult services
o Living independently
o Planning for the future as parents grow older
o Planning for end-of-life care.

• Signpost support, training and opportunities for adults living with TSC who want to work or volunteer in their local community, working with expert partners where appropriate.

• Develop information materials that are accessible for people living with TSC who have learning disabilities.  These materials will help them to make informed decisions about the treatments, care and support they need, particularly at points of transition in their lives.

• Improve care from non-specialist professionals (such as residential care workers, home care workers, teachers and social workers) who work with people living with TSC. This could be by delivering an annual CPD training conference, online CPD training modules and tailored information materials to improve their skills and knowledge about TSC.

How will we know if we have been successful? (Measurement and evaluation)
Please note that clear measures and evaluation criteria will be added to the final version of the strategy. 

Who will lead on this work within the TSA? (Leadership)
The Head of Support Services and Information, reporting into the Chief Executive.
 
2. TSCampaign
What are we trying to achieve? (Outcomes)
People living with TSC and their families can access the treatments and care that they need from the NHS.
People living with TSC can access high quality and well-funded support from health, social care and education services.

How will we do this? (Outputs)
• Make sure that NHS funding is available, so that people living with TSC can be prescribed everolimus for epilepsy in England, Scotland, Wales and Northern Ireland.

• Drive the on-going development of high quality TSC clinics across UK.  This could be by developing a service specification setting out what a high quality clinic looks like, or by reviewing and quality-assuring TSC clinics, based on the experience of people living with TSC and their families.

• Lobby for multi-disciplinary teams in TSC clinics to include a broad range of expertise that supports people living with TSC and their families around both physical and mental health issues.  For example, a TSC clinic could include support focused on autism, learning difficulties, mental health problems and language therapy.

• Campaign in partnership with other health and rare disease charities for better-funded and higher quality services across the health, social care and education system

• Campaign in partnership with third sector partners for the UK to remain part of the European Medicines Agency region for medicines licensing to maintain fast access to new treatments after Brexit.

How will we know if we have been successful? (Measurement and evaluation)
Please note that clear measures and evaluation criteria will be added to the final version of the strategy. 

Who will lead on this work within the TSA? (Leadership)
The Head of Fundraising and Communications, reporting into the Chief Executive.

3. TSCure
What are we trying to achieve? (Outcome)
People living with TSC and their families are supported by evidence-based tools that help them to manage the impact of the condition on their health and quality of life now.
People living with TSC and their families are influencing the development of new disease-modifying treatments to minimise the impact of the condition on their health and quality of life in the future.

How will we do this? (Outputs)
• Proactively fund and stimulate research that supports the development of evidence-based tools to manage the impact of the condition now, with a focus on:
o Developing TSC Associated Neuropsychiatric Disorder (TAND) tools to diagnose and manage symptoms around behaviour, intellectual disability, autism, learning difficulties and mental ill health for people living with TSC. 
o Developing tools to help families cope with emotional impact of TSC.
Where possible, we will work in partnership with larger patient groups that specialise in these areas (for example autism or mental ill health).

• Proactively promote and stimulate research that will help best target disease-modifying treatments to minimise the impact of the condition in future, with a focus on:
o Establishing a clinical trial to look at the impact of prescribing the best drugs available from birth, in partnership with international TSC patient groups. 
o Establishing a clinical trial to determine the right dosage and frequency of use for the best drugs available for facial angiofibromas.

• Reactively fund research in promising new areas, making sure that we listen to the views of people living with TSC and their families, to help us prioritise the areas of research that have the potential to make the biggest difference to their lives.

• Establish a better infrastructure to support all TSC research taking place, including:
o Establishing a TSC registry, audit mechanism, and quality of life measures, working in partnership with international TSC patient groups.
o Disseminating our own and others’ research findings internally and across TSC clinics and to researchers, so we are using them collectively to drive improvements in policy and practice and avoid duplication of effort.

How will we know if we have been successful? (Measurement and evaluation)
Please note that clear measures and evaluation criteria will be added to the final version. 

Who will lead on this work within the TSA? (Leadership)
The Head of Research, reporting into the Chief Executive.

4. TSCommunity
What are we trying to achieve? (Outcome)
People living with TSC and their families are at the heart of the TSA.

How will we do this? (Outputs)
• Empower the TSC community to come together at regular face-to-face events across the UK, and online through social media, so that people living with TSC and their families can laugh, cry and celebrate together, support each other, and learn from each other’s expert experience of living with TSC every day.

• Establish a representative TSC Advisory Group, with terms of reference focused on helping the TSA Board of Trustees and staff to listen to the broader TSC community.  The aim of the TSC Advisory Group will be to make sure that the TSC focuses on what matters most to people living with TSC and their families, and provide effective support for people at all stages of life and all levels of severity of TSC.  It will include:
o Two adults who are mildly affected by TSC
o Two adults who are moderately affected by TSC (who can bring a family member or carer to help them contribute to the meeting)
o Four parents or siblings of individuals who are severely affected by TSC (to increase the likelihood that there is input from this group, who may find it difficult to 
contribute during periods of health crisis)
o Two parents of young children living with TSC
o Two parents of older children living with TSC
o Two parents, partners or siblings of young adults living with TSC
o Two parents, partners or siblings of older adults living with TSC.
The TSC Advisory Group will meet twice each year to ask for the views of the TSC community.  For example on the TSA’s draft business plan for the coming year, or proposed research priorities for the next two years, or the proposed venue and programme for the Big Day.  Members of the TSC Advisory Group will serve three-year terms, and will not also be on the Board or RESCOM, in order to generate fresh views.

• Carry out quality of life benchmarking, to understand the current experience of people living with TSC and their families.  This exercise will be repeated regularly over a ten-year period to monitor and evaluate changes, and drive improvements in people’s experience over time.

How will we know if we have been successful? (Measurement and evaluation)
Please note that clear measures and evaluation criteria will be added to the final version of the strategy.

Who will lead on this work within the TSA? (Leadership)
The Head of Fundraising and Communications, reporting into the Chief Executive.

Please fill out and submit the 5 year 2017-2022 consultation response form below:
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