Are you interested in using your lived experience and voice to help us shape the future pulmonary fibrosis research?
We have so far held 2 virtual support groups via zoom and there is a clear theme running throughout. That is of course how COVID and social-shielding has impacted on everyone’s mental well-being.
Overall there is understandably a lot of fear and uncertainty about the future with varying responses within my group as how best to deal with this, with general advice being vague. The group were divided in their actions. Some patients are keen to get out and have been doing so responsibly already by venturing for walks during quieter periods of the day whilst of course adhering to strict personal protective measures. The others in the group have not (or rarely) left their home and refuse to do so until a vaccine has been produced.
Clearly with this confined lifestyle, mental health issues in some form will emerge or be heightened where they already exist. This can impact upon the health of a person suffering with a long-term condition such as pulmonary fibrosis and symptoms can be exacerbated. The home environment and level of support at times had a role in this. For instance, if a person was living alone or in a flat with no outdoor space available.
The Imperial ILD support group therefore invited clinical respiratory psychologist, Dr Daniel O’Toole to provide expertise on this very topic at our meeting on Friday 19 June 2020.
During the session the feeling expressed by many was overall frustration by the fact that they feel unable to do things as before. A sense of loss. They are not only restricted by their lung disease but now even more so due to shielding.
One area that Dr O’Toole discusses is Acceptance and Commitment Therapy (ACT). Recognising the situation and knowing that it is not within your control. Only by accepting this, thoughts can be approached from a different angle and objectives/behaviours are then modified to become more realistic as a response to this change.
He also discussed the issue of anxiety on a wider scale recognising how this can lead to breathlessness and vice versa. One patient responded by sharing his experience with meditation and mindfulness. Applications such as Calm and Headspace are useful tools but may charge a fee for more advanced advice, however there are many free online tools that can be utilised and one team member suggested YouTube as a good source for free material.
If you are struggling with any of these issues and would like some support then the NHS have a free service called IAPT or Talking therapies. They offer a variety of services (individual or group-based, face-to-face, telephone or online), and will adapt them to your needs. One of which is tailored for long-term health conditions to help cope with mental and/or emotional issues with depression, anger and anxiety being frequent concerns.
You can self-refer via an online form or ask your GP or ILD team to do this for you. For central and North West London Talking Therapies the link is https://talkingtherapies.cnwl.nhs.uk/how-we-can-help#modalOpen but each area in the UK will have an affiliated service.
Other issues raised during our meeting were,
• Awareness and inclusion in trials – please take a look on this site as Action for Pulmonary Fibrosis (https://www.actionpf.org) provide details on latest research opportunities.
• Face masks/coverings causing restrictions to breathing – awaiting overall guidance on this. I know of one charity who have produced badges so that the public are aware that a person has a lung condition.
If you would like to attend our online support group please express your interest at imperial.ILD@nhs.net