REGAIN: tackling the impact of blood clots

by Thrombosis UK in Llandeilo, Carmarthenshire, United Kingdom

REGAIN: tackling the impact of blood clots

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Keep what you raise – this project will receive all pledges made by 9th November 2021 at 9:00am

To tackle variation in access to support after a diagnosis of VTE or VITT by developing a virtual service, supportive resources & researc

by Thrombosis UK in Llandeilo, Carmarthenshire, United Kingdom

1 in 4 people worldwide are dying from conditions caused by thrombosis (blood clots). World-wide, each year more people die as a result of blood clots than the total number of people who lose their lives each year to AIDS, breast cancer, and motor vehicle crashes combined. 

Thrombosis is the formation of a blood clot in a blood vessel.  Blood clots can form in any part of the body, but most commonly, blood clots form in the deep veins of the leg, these are known as deep vein thrombosis (DVT). Left undiagnosed and untreated small parts of a blood clot can break off and travel in the blood stream to the lungs, this is known as pulmonary embolism (PE). A PE is very serious life threatening condition that needs urgent medical attention.

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Clinical research has demonstrated that the psychosocial impact of 'blood clots', can be life-changing. Research has also highlighted the benefit of identifying and providing early support to individuals at risk, and where beneficial, offer interventions to enhance psychological well-being, recovery and reduce distress.

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Every day the Thrombosis UK Team receive calls and enquiries from individuals of all ages and backgrounds who have been diagnosed with a blood clot, or more recently, Vaccine-induced Immune Thrombocytopenia and Thrombosis (VITT) and are struggling, not just with physical recovery but also mental well being as a result of the sudden, unexpected and often life-threatening event.

Below are just a few of many comments we receive: 

....." I was 16 at the time so just starting my GCSEs. One morning I woke up for school, and my left leg felt very strange.... over the next 18 months I was diagnosed with two seperate DVTs but my journey doesn't end there, due to all the damage my veins received I have had three stents put into my vein to keep it open, I have also had four major leg ulcers on my ankle due to the damage, which are horrible to have and a pain in the leg to get rid of...... I was normally a fit and healthy young lad who had a passion for cooking and training to be a chef but all this has gone and it is hard to come to terms with why..."

....."I was 22, for a long time I struggled with fatigue, blurred vision and dizzy spells. When I was eventually diagnosed with a PE my family were told they might need to say goodbye.... For me a diagnosis was a relief, but I had no undertsanding of the journey ahead of me..."

....."The biggest challenge has been accepting the 'new norm' at an age when you think you can do anything..."

....."I had planned to retire at 65 and travel. I now feel that has gone out of the window because it has taken away my confidence..."

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Blood clots associated COVID-19 and Vaccine-induced Immune Thrombocytopenia and Thrombosis (VITT), have increased both the number of previously healthy people who have suffered a thrombositic event and need for psychological support in recovery. 

NHS thrombosis services are recommended to include provision of access for referral to counselling/ clinical psychology support. However, it is acknowledged that access to services is variable and those that are available are overstretched and unable to accommodate need.

Thrombosis UK is determined to address this and make a difference for the tens of thousands of people affected by thrombosis every year in the UK, and the hundreds of thousands struggling with the after effects of a life-changing event.

With your help, funds raised through the REGAIN Appeal will be used by Thrombosis UK to:

1. Extend training and skills sets for Thrombosis UK’s HelpLine and patient support services to ensure

2. Refer people to local health services as appropriate.

3. Draw upon expertise from specialist clinical psychologists, to develop self-help and minimal intervention strategies as first-line treatment for people experiencing mental health problems as a consequence of thrombotic events, and where appropriate sign-post existing material that may be of benefit.

4. Develop resources covering print / film and audio to provide a first line access and referral to robust information and guidance on ‘self-help’ for those either mildly impacted or in tandem interventional support. The resources will be endorsed, medically approved, shared with NHS services and made available free of charge to all.

5. Utilise multiple communication channels, professional bodies and providers and to raise awareness of the resources and service offered by the REGAIN programme and freely accessible to share/signpost.

6. Develop a dedicated online training module suitable to be included in basic VTE nurse and doctor training to highlight

• The psychological impact of VTE

• Reducing impact

• Improving patient pathways

• Opportunities for support and interventions

7. Establish a virtual specialist clinical psychology service offering online sessions to referred patients. Interventions will include a range of therapeutic approaches as justified by the patient's needs. These may be individual or group focused and therapeutic approaches will include cognitive behaviour therapy, mindfulness, and Acceptance and Commitment Therapy based approaches.

The importance of this service being made available via an online platform is to ensure:

• Timely access

• Equity of access

• UK wide reach

• Maximise efficiency

8. Appoint a specialist service led by a fully qualified and experienced clinical/counselling psychologist, qualified to Doctoral and level holding a recognised qualification in clinical psychology.

9. Develop self-help and minimal intervention strategies as first-line treatment for people experiencing mental health problems as a consequence of thrombosis, and where appropriate sign-post existing material that may be of benefit.

10. From the launch of the REGAIN programme, a research trial would be conducted to monitor:

• Implementation

• Access

• Interventions

• Patient recovery and outcome measures

11. The research project will consider the outcomes from a co-ordinated psychological intervention programme in VTE patients including those who have been diagnosed with VITT, have had a VTE or whose VTE was COVID related.

Research findings would be peer reviewed and submitted for publication.

12. Learning from the programme and supported by the research finds would:

• inform the development of care pathways for supporting improved VTE patient care to minimise risk of psychological impact

• provide resources for training and implementation

• provide tested interventions and resources for varying levels of intervention.

Informed by clinical evidence REGAIN will look to provide early intervention and self-help resources to benefit individuals that have proven benefit. This will include cognitive behaviour therapy (CBT) and related interventions needed to equip the individual with self-help skills to be able to continue to recognise and manage levels of health related stress and recognise the need to seek early intervention if severe reoccurrence or ‘flare up’ occurs. 

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REGAIN will redresses inequity of access to bring benefit to patient outcomes, care, long-term recovery and burden on NHS services.

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