As a social worker I provided support to people in times of need (recognising the value and benefits of this). However, as a patient, I didn’t always feel I got asked what style or sort of support I might find personally helpful. It was more like ‘this is the range of support on offer, let us know if you need anything’. My experience through this lens was challenging both internally and externally; especially challenging, was my engagement with family and friends. What do I mean?
Well, at the start of my journey it’s true, I was surrounded by empathetic professionals and volunteers who outlined a range of support options to me. Some of these appealed to me and others didn’t. On reflection though I realise that I didn’t absorb everything I was told, despite my professional background.
One thing my wife and I are learning, following a cancer diagnosis, is the time required to come to terms with the future, and yet paradoxically once we received the diagnosis, we automatically felt as though the clock had started ticking and time was running out!
Despite these feelings, we’ve been fortunate to have met, as an inpatient, some fantastic, dedicated, and passionate staff and volunteers, all too willing to point us in the right direction or listen and answer our questions to help address our fears and anxieties. However, upon returning home, I quickly realised being confident with a positive outlook can be misinterpreted by professionals as being okay and no longer in need of support. How wrong they were.
We have a very strong circle of family and very dear friends who check in regularly and are always there for a call or a chat in those tough moments. But it’s really made us reflect on who’s there for those who might be alone and without access to such support networks.
The health system was wonderful at supporting us, both engaging with staff and the wider support offer such as support groups; specialist nurses (statutory and voluntary), social workers, and beyond. But this doesn’t address the concerns I have about how to access this support and the consequences of one’s decisions.
There is no doubt about the benefit of peer support from my experiences - both while in hospital and returning home. I’ve met people in the same situation who I am pleased to say have become confidants and, in some cases, friends. While I’m acutely aware that the outcome may be different for each of us, the camaraderie (in that short period of time) is key to boosting our health and well-being.
More than one person impressed on me the importance of having a positive approach to whatever follows. I’m fortunate as positivity comes naturally to me but I’ve equally spoken with others who want to be strong, but the toll of treatment has not made that easy.
Some things I’ve learnt along the way:
- A simple one line message or text asking how I am doing can make a great difference if feeling isolated.
- A quick call to see how I was doing after treatment made a difference - just for remembering.
- When I say I’ll contact you later if I’m okay as I’m not up to contact at the moment, it’s not a negative but a strength.
- The importance of saying thank you, and I really appreciate all you do for me when nursing and allied health professionals have had a hard and long day.
- Support comes in many ways and it’s important to both acknowledge it, if you are fortunate enough to receive it, or seek it out if you are feeling low.
Here are a few messages to reflect on from both my fellow patients and from my own personal experience:
- Don’t assume everyone has got it and understands everything right from the start
- Don’t take “no thanks, not at the moment”, as “I won’t ever want help thanks”
- Don’t be afraid to ask if it’s okay to make contact in a week or so to see if you need anything
- Do offer your name, a smile, and some reassuring words. It will mean a lot
- Do ask again next time you see someone how they are doing, and can you help in anyway
- Do be prepared to act as a conduit to access support from other colleagues
- Do really help to break down professional barriers if you can see it’s easier for the patient
As noted in previous blogs, I’ve been blessed by experiencing the best possible practice from fantastic practitioners throughout my treatment process. Many of the ‘do’s and don’ts’ above have been met without hesitation, but I’m aware that this isn’t the case for everyone.
We realised very early on the importance of having two of us in consultations with key workers, as between us we remembered most of the points made. Try and avoid people being alone for important meetings and ask them if they want someone with them. Ultimately, it’s their choice but important they have the option.
I’m very aware that this has been a personal journey that, with the blessing of my family, I have shared publicly. All I ask is, if you are reading this personal insight and have some resonance with any of the points I’ve made, please use them, or use your influence to further enhance the service to people in need of support across the sector.
I want to say a huge thank you to all at James Cook Hospital for their skills and experience in supporting me through this significant journey. South Tees Hospitals @SouthTees and also a huge thanks to Macmillan