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Actively changing the future for people with chronic conditions

What We Do

WITH THE RIGHT TOOLS AND INFORMATION, PEOPLE WITH CHRONIC CONDITIONS CAN START TO TAKE CHARGE OF THEIR OWN DESTINY, AND ULTIMATELY LEAD MORE FULFILLED AND ENGAGED LIVES.

Steve Savva, Head of Physical Development

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Active Futures is a non-profit social enterprise dedicated to changing the lives of those with chronic conditions. It was founded by Emily Andrews and Pippa Palmer, two sisters who share a genetic condition, and Steve Savva, an expert in exercise physiology.

Through their own experience of diagnosis and post-diagnostic care, Emily and Pippa realised that for many thousands of patients – particularly those with less common conditions – there is little on offer to address the specific physical and emotional needs that accompany life-long and life-changing illness. The lack of provision and support leaves thousands of patients in a kind of ‘limbo’, often feeling quite despairing and unable to live their lives life to the full.

Active Futures focuses on empowering the patient to become active in their own care (an ‘Active Patient’) through bespoke patient programmes – such as post-diagnosis workshops, stress management, relaxation sessions, as well as adapted activity programmes – all designed to support patients and to equip them with the tools to achieve optimum health and a more positive and harmonious lifestyle.

What is a chronic illness?

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At Active Futures, we consider a chronic illness to be any long-term condition that has a negative impact on a patient’s day-to-day life and is likely to do so for the foreseeable future. The negative impact might be due to episodes of pain, loss of stamina or increased fatigue, due to mental or physical limitations, or a result of unpleasant symptoms that affect the body, mind or senses.

Symptoms may be constant or come and go. The root cause might be genetic or environmental, evident from birth or acquired in later life. The condition could be immediately obvious, or wholly invisible. The patient may have a firm diagnosis, or be searching for answers – or (more likely) have several body systems affected simultaneously and find things constantly changing.

Whatever the circumstances, your medical condition is likely to be disruptive to your life and chances are, you’ve discovered there is not much support available to help set you on the right track. That’s why Active Futures is here, with a range of programmes to help people deal with the physical and emotional impacts of chronic illness, so they can lead more enjoyable, positive and productive lives.

Our Programmes

Our Activity & Conditioning Programme for Children with Ehlers-Danlos Syndrome (EDS) Hypermobility Type
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Children from our first Bedford pilot, proudly collecting their end of course certificates.

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This programme has been specially designed in conjunction with paediatric physiotherapists to specifically strengthen and improve control in muscle groups that stabilise main joints – areas that are typically weak in the EDS child. This weakness contributes to joint injuries, subluxations and pain, all of which all hold the EDS child back and cause withdrawal from mainstream activities.

To build strength, our specially designed circuit comprises a series of tailored activities with differing effort levels to allow for self-challenges.

The weekly course is strictly non-competitive. Children are encouraged to perform slow, conscious controlled movements rather than using a frenetic or uncontrolled approach which increases the risk of injury – a typical EDS trait. This allows children to safely and slowly build strength and confidence before progressing to the next level.

Future Programmes

We are currently seeking funding to expand the EDS Children’s Activity & Conditioning Programme into other areas.

Further programmes in development for EDS patients include:

  • A family post-diagnostic workshop
  • Adapted swimming for children with Sensory Processing difficulties
  • Adult EDS Activity and Conditioning Programmes

Measurement and Evaluation

IT ISN’T ENOUGH TO JUST SAY WE CREATE CHANGE – WE NEED TO PROVE IT. THAT’S WHY WE COMBINE BEST OF CLASS PSYCHOLOGY AND PHYSIOLOGY WITH BESPOKE TECHNOLOGY, SO WE CAN CONSTANTLY MEASURE, PROVE – AND IMPROVE – WHAT WE DO.

Pippa Palmer, Head of Programmes

By taking measurements at key stages – before, during and after each programme – Active Futures measure how each participant has progressed quantitatively and qualitatively. For example, in a physical exercise programme we would expect to see evidence of measurable improvements in strength across key muscle groups, core stability, balance and co-ordination and – it is hoped – a keen interest in continuing physical activities after the course. In a family workshop, we’d expect to measure evidence of improved family cohesion, coping skills, higher levels of confidence and reduced feelings of helplessness and isolation. An ‘Active Patient’ reporting back after working through our programme could measure their own improvement in key areas such as community participation, pursuit of higher purpose, sleep hygiene and stress management.

This vital data is gathered using Active Future’s bespoke technology. An app designed especially for our programmes – and possibly the first of its kind to gather ‘real time’ measurement and evaluation data – is loaded onto tablets and recordings made during face-to-face sessions. A similar web interface runs alongside online programmes. The resulting data will not only to benefit the individuals on the programmes but will be a vital tool to help improve rehabilitation services for chronic patients everywhere.

As each programme rolls out nationally beyond the pilot, Active Futures will collect and present consolidated data to health commissioners, to prove that, whilst there is no known cure for many of these conditions, upstream interventions and early provision of well-designed rehabilitation and physical activity programmes can help set chronic patients onto an upward trajectory, with positive impacts across variety of quality of life indicators, such as mental and physical health, social inclusion, and work and education outcomes.

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What We Don't Do

We do not offer medical advice
Medical care is solely the responsibility of your clinical team. Nor can we prescribe or recommend medication, treatments or therapies.
We do not replace your patient support group
Many chronic conditions – particularly the more common ones – are served by patient support groups who offer excellent, tailored advice relating to that particular condition, as well as keeping patients abreast of research and medical news. If your condition is well-served by such a support group, we recommend that you stay involved with them, and use Active Futures tools to supplement the very valuable information they will be giving you.
We are not mental health experts
It’s a sad fact that depression and other mental health issues often go hand in hand with chronic conditions. This is not surprising; chronic illness touches every aspect of a patient’s life, destabilising routines, affecting work and relationships, bringing financial uncertainty, and often striking at the very core of what it means to be ‘you’. That’s aside from the impacts of pain, poor sleep, haywire hormones and other disrupted physiological functions.
For this reason, we at Active Futures put a lot of emphasis on emotional well-being – that is, helping you explore new ways of looking at life, and providing tips and tools for keeping depression at bay. However, we are not mental health experts, and cannot give any advice beyond a basic life philosophy and a basic toolkit.