“The best thing about the workshop was meeting others and hearing their experiences, and realising that everything I’m feeling they feel too so I’m not alone and it’s ok to feel like I do. I left feeling more confident, inspired to be more positive and be more active, and with a fuller knowledge of lymphoma.”
At the start of the session Anne came in looking quite distressed, frail and agitated. By the end of the day she was smiling and laughing, a changed person with a new lease of life. This is the essence of the live your life – living with and beyond lymphoma programme and makes the development and running of it all worthwhile.
The live your life – living with and beyond lymphoma programme provides education and support for people who have been diagnosed with and treated for lymphoma. The programme aims to support self-management with a specific focus on lymphoma, taking an holistic approach to the needs of people affected by lymphoma, covering both general health and wellbeing issues and the intricacies and differences that lymphoma presents, such as:
- the many varied forms and subtypes of lymphoma, with different treatments, outcomes and after-effects
- the chronic, long-term nature of many forms of lymphoma (i.e. they are incurable and patients will have an inevitable relapse and further cycles of treatment, remission and relapse)
- the active monitoring also known as “watch and wait” approach to treatment, whereby a diagnosis may be made, but no treatment will follow, until the disease progresses.
- the psychological aspects of living with this form of cancer which can be seen as similar to other long term chronic conditions
We started developing the programme two years ago following broader policy work around cancer survivorship and recovery. There are a number of general cancer programmes available for participants but people affected by lymphoma kept telling us lymphoma is different and having something specific would be even better.
The key aim was not to duplicate any programme or approach but to complement and learn from those that are available. As a result, we worked with people affected by lymphoma to co-develop the programme, pilot it and have secured Big Lottery funding to expand the delivery of the programme more widely.
It was great to find out that there was the newly formed supporting self-management community of practice through National Voices' Wellbeing Our Way programme starting around the same time.
Being able to share with and learn from others who were going through similar developments at different stages was really useful. We could contribute insight to each other’s challenges whether it was around approaches to learning, securing funding or programme outcomes. It helped to learn from good practice, validate thinking and development around our programme as well as finesse the direction of travel. It was really helpful to put the development of our programme in perspective and to sanity check expectations amongst people who had already done it.
It was particularly useful to hear from people representing different condition areas and not necessarily cancer. Measuring impact and monitoring was a new skills and experience area for me personally and the community of practice really helped to crystalise my understanding around this. It was also useful to get contacts and recommendations from the participants of the community to follow up.
The five key points that we learned from the community of practice about running our supporting self-management project are:
- It is good to talk, share and listen – there is a lot of information and organisations that are developing this area. By talking and sharing with them and involving your audience it really helps to inform and develop your own approach
- Give it a try and pilot it – you can plan, develop and review but at the end of the day there is nothing like trying it out, firstly with critical friends and then building up to real users, adjusting and responding to feedback
- Collecting information and data is important – whether it is informal feedback, measuring formal outcomes or noting useful quotes, it is important to collect and record as much as possible, within reason, in order to have it to hand when you need it for reporting or raising funds.
- Size does not matter – whatever the size of your organisation you can be effective and develop for you audience. There is always a larger organisation than you who seemingly has many resources. More often than not they are also starting small, trying things out and learning from you.
- Be cost effective and innovative – you do not need large amounts of money to get going and can deliver an effective programme in different innovative ways. By doing this you can learn and develop so that you can demonstrate value for money and expand appropriately.
So two years on it is really exciting to be updating the community of practice as to how far we have come and what the future holds for our programme. We are rolling out the programme over the next two years and expanding participation rapidly. I look forward to sharing the knowledge and experience we have gained with others.