Last week I was at the ‘Ostomy Days 2018’ conference held in Copenhagen for 900 Stoma Care Nurses (SCN’s), Healthcare Professionals and Coloplast colleagues. From those 2 days, I have learnt a lot especially the different aspects of stoma care but one of the sessions that I found really interesting was for the UK SCN’s. This session talked about recognising that SCN’s practice needs to adapt to keep up with the times e.g technology, more online information and communication and this session discussed how they could start achieving this.
A phrase I kept hearing a lot in the different sessions, in regards to patients was ‘what matters to you?’ If I am honest I had not heard about this until Terri one of Coloplast Stoma Care Nurse the week before the event met Steve and I to discuss the master class session, where we changed our bags on stage. Terri kept mentioning this phrase and the big push in designing care around the patient and what matters to them.
10 years ago I qualified as a Therapy Radiographer in Radiotherapy and Oncology (before I got ill) and during that time there was a big push in NHS England to help enable a patient to become an ‘expert patient and empowered’ This still seems to be the theme today but this has evolved from Healthcare Professionals asking ‘what matters to you?’ instead of ‘what is the wrong with you?’ This allows them to adapt their care to get their needs met better which ultimately results in better outcomes and recovery.
Originally this initiative started in 2014 in Norway with the aim of encouraging and supporting more meaningful conversations between people who provide health and social care and the people, families and carers who receive it. This helps Healthcare Professionals establish a relationship and understand the person in the context of their own life and what is most important to them.
‘What matters to you?’ day
On the 6th June 2016 in Scotland, 'what matters to you?' day was launched. The day had an incredible amount of response and now this is celebrated every year on the 6th June. This year they are expanding to England and helps highlight the point about gaining a better understanding of what matters to patients which ultimately improves their experience, quality and effectiveness of care.
Some great examples of the ‘what matters to you?’ campaign
After researching this topic I came across an article about how Guy’s and Thomas Hospital have incorporated this in a creative way by introducing innovative new bedside boards in 2014.
The specially designed whiteboards sit beside the patient’s bed and are updated daily by staff and patients to include the names of the nurse and doctor looking after them. What is different is that this board also includes personal details like their favourite drink, preferred name, bedtime or favourite musician.
The article states that the boards have made a huge difference and are accessible to patients so they feel they have a say in their care. Sometimes it is the smallest details that make the biggest differences and have a real impact on care and recovery.
This is not the only hospital that has rolled out these boards. I believe there are quite a few hospitals that have taken this initiative up. I am hoping in the future Bournemouth hospital will adopt this because I believe this will really help other patients and myself when I get admitted again.
Asking patient's ‘what matters to you?’ is becoming one of the fundamental questions underpinning discussion with patients and making the interaction more patient-centred.
Applying this to stoma care and supplies
We are all different and this is so true in relation to ostomates. No stoma is the same because our bodies are different, our diseases are different and we are all individual. One product that works for one ostomate may not work for another.
Baring this in mind there seems to be a big push to get this question “what matters to you?” in the review clinics to find out what really matters to ostomates in regard to their life and their products. I love this way of thinking making ‘us’ the patients at the centre of our care and designed around what is important to us.
So what would my answers be to “What matters to you?”
- Keeping a level of independence throughout my chronic illness.
- To stay as well as possible and to stay out of the hospital so I can enjoy my life.
- My friends and family are very important to me.
- To be recognised that my illness is extremely complicated and to be listened to by Healthcare Professionals.
- Self-development through my illness.
- To eventually start swimming again at club level (or begin the process of training again).
In order to keep a level of independence throughout my illness for the last 2 years, I have had to have a carer/PA as part of the direct payments scheme who comes in an hour a day in the week doing jobs that I can’t do. This allows me to continue living on my own and maintain that level of independence regardless of surgery, recovery and admissions. I also find being listened to is extremely important to me when I am in the hospital. At times I have lost my voice in regards to my care so this is an important one. My illness is extremely complicated and the complications I have accumulated can be confusing so when Healthcare Professionals really do listen to me and ask me questions if they don’t understand I feel like they care and understand that I know my body.
So this year on June 6th ‘what matters to you?’ day I will write a post sharing lots of ostomates answers to this question. Hopefully, we could run this on social media with the help from other advocates alongside #WMTY18 for another way to raise ostomy awareness in regards to this question.