Self management – is patient power and control a thing of the past, again?

Written by: David Brady, Community Support Coordinator, Chest Heart & Stroke Scotland

Published: 14/07/2021

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David Brady from CHSS shares his thoughts on self management during the pandemic through his own experiences.

The last year has been extremely challenging and tough for everyone, of that there is no denying. I have lost family members to long term illness and COVID-19 over the past 16 months. Another large concern for me and for other’s flowing through the current pandemic has been the change in the way people with long term conditions have been able to continue their own self management or should I reword that, been unable to self manage due to several barriers and control being removed.

So, what does self management mean to me. I was aware when I spoke at self management week for the ALLIANCE in 2019 that my own self management journey was somewhat privileged compared to others, something that I am sure most people living with long term conditions can recognise, the different levels of support and care across the sector is not the same for all.

For over ten years I have had a fantastic self management journey, the previous 15 years I was at the mercy of when I could be seen with my own views often not heard. However, my consultant at the hospital was very forward thinking and years ago instead of issuing me with an appointment to see him every six or nine months he gave me the option to self-refer for my treatment when I felt it was needed to see him. This made me feel in control about my condition and a reassurance that when I was feeling sick and unwell that I only had to call his personal assistant (PA) and an appointment would be made. This was a good relationship for both parties as I was not taking up an unnecessary appointment every six months, as I now did not have the fear of losing my place in the system. This worked excellently until April 2020 when I was due to visit him for treatment but my appointment was cancelled due to the pandemic. A further three appointments up until September 2020 were cancelled with my pain gradually getting worse and worse. Then nothing. No communication and no updates. The number for the consultants PA would just ring out, the central booking line would just state there is nothing in the system and I would need to speak to my doctor about a referral, this does not sound like the self management I have come to know and love to feel supported and empowered. All the time my pain is getting worse and the fear and panic returning about being sick with everything running through your mind about work and supporting your family. Self management and getting access to treatment had stopped these thoughts for over ten years. I have since managed to speak with the consultant’s PA but with no date for an appointment even though they are aware of the pain I am currently experiencing. My fear is the fantastic self management I have had, and others have enjoyed living a fulfilling life, has come to an end.

Speaking to other people living with long term conditions I know I am not an isolated case. Many of the vital services they have accessed to help them feel in control have since stopped over the last 16 months or the previous ease of access has changed since the pandemic. As we look to recover from the pandemic it is vital that these services start to reopen and people living with long term conditions are put at the centre and allowed once more to take control of their own management of the condition, but for some the damage has already been done.

However, we still have amazing, local, and national organisations doing all they can to help support local people in their community. I know if I had not had simple access to peer support for my own situation, I would be in a far worse place. I am grateful to have been asked to be a judge for the upcoming Self Management Awards and am really looking forward to reading through the fantastic nominations that have managed to help support self management in these trying of times. Self management is an amazing way for people to control their own care but only if they still equip and allow people to manage their care. Hopefully, that will return in the future.

For more information on CHSS, please visit their website (this link will take you away from our website).

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