Living with a chronic illness can sometimes feel like a full-time job. What with juggling hospital appointments, visiting your GP, collecting medication, chasing up referrals, running a house and maybe a family. It is easy to lose an element of ‘you’ and to be consumed by your chronic illness.
I have been wondering how to introduce this amazing gentleman...Today we have Peadar who is 41, from Northern Ireland sharing his story about how he acquired his colostomy and urostomy which was not due to an illness. I think I will let Peadar explain:
When you have been an ostomate for a while you may go through stages where you ‘chance’ not taking your emergency kit out with you. Most of the time you may be fine but when you are out enjoying yourself and a leak hits, then you are stuck and may have to leave the event to change your pouch.
I can't believe that this is the 6th #UroStories already and today we have the amazing and beautiful Natalie Wicks who is 28 and from South Wales. Natalie has been through so much and still continues to have problems with her kidneys which requires stents and a nephrostomy as well as her urostomy. However, despite this, she will still help support and inspire other people with pictures in her bikini or her honest posts. It is an honour to share her story!
‘It’s in your hands – prevent sepsis in healthcare’
You may be wondering why I am writing a post about this day? Considering this is aimed at Healthcare Professionals and the majority of my readers are ostomates. The reason why I have decided to highlight this very important awareness day is due to my own experience.
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 me?’ 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 the 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 have 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 ‘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 me?”
- 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.
Attending the hospital can be a frightening experience whether this is for surgery, an admission, chemotherapy, infusions or radiology investigations. You wait anxiously among strangers with little information and often instructed to undress into a hospital gown that can undermine your dignity and leave you feeling partially exposed.
I am sorry this is a few days late, I have had a very busy week. Welcome back to the 4th instalment of the #UroStories series. Today we have the lovely Donna Wood from Tyne and Wear who is 32 joining us. We connected last year and she has been a great support and is equally passionate about urostomy awareness. Also, Donna started the Urostomy Support Tyne and Wear/North East Facebook group for other urostomates in her area.
For the 3rd instalment of #UroStories, we have such an inspiring and lovely man called Rich Greene, who is 69 and lives in Columbus, Ohio, USA sharing his story. Rich touches on so many brilliant points in his answers that don't only effect urostomates but ostomates in general.
I have mentioned before that my theme for this year is ‘stepping out of my comfort zone’ I have already accomplished things I wouldn’t have done last year like public speaking, lifestyle shoot and going abroad. So, when Paige messaged me to ask if I would be a catwalk model for the Purple Wings event I just went with my theme and said ‘yes’ even though deep down I started doubting myself. I pushed those thoughts away and saw it as another experience to participate in.
Over the last few years, I have been a regular inpatient at Bournemouth hospital. In 2016 I spent 7 months all together as an inpatient and last year I was admitted 6 times. Thankfully my admissions are reducing but I am prone to sepsis which can come out of the blue and involves a prompt visit to my local A&E and an admission.
Welcome to the second instalment of #UroStories Series. Chris' story last week went down really well and today I am excited to introduce a lovely lady Sue Cavanagh from Norfolk who will share her story. Take it away, Sue!
I am so excited that Steve and I can officially talk about this product. Steve trialled this last summer and loved it. He was then asked to do a testimonial video in October. He mentioned to the team that I wanted to trial the product, since I have a hernia and prolapse, and they sent some samples out to me in December. We were then asked if we wanted to do a lifestyle shoot in Gran Canaria about how we met, our story and the new product. The experience was amazing, we loved every minute of it and it was the first time we have been abroad since our surgery. Hopefully, the film will be out soon.
I am excited to announce the start of my #UroStories (Urostomy Stories). I have wanted to do this for such a long time and finally I have got round to it. I am so overwhelmed with the response to my post asking for urostomates to fill my questionnaire to be presented in this series. I had more than 56 people interested which means this series should last a year on a weekly basis every Monday.
The first person I would like to introduce is an awesome guy who is actually a Double Bagger called Chris Livett and he has just started a blog called 2bags-NoButt (loving the name). Chris is 41 years old and lives in Bebington, Wirral, so take it away Chris:
It is no secret that since July last year I have done a LOT of travelling. Mainly to see my lovely man Steve who lives in Birmingham but also for stoma-related events and work. Most of my travelling involves going on the train because I cannot drive but I remember for years I used to worry about having a leak and emptying my stomas using the train toilet. This held me back from travelling for a very long time but since the Purple Wings ball last July I have been gently pushed into travelling more.
It can be really nerve-wracking travelling by train for the first time after ostomy surgery. When I looked for specific articles about this I couldn’t find much, so I thought I would share 10 tips to make travelling by train with an ostomy a little bit easier.
This is my 3rd post for my monthly series #SelfHelpBookReview. I cannot believe it is March already. I am so glad I started this series because it is giving me the motivation to read again and to actually finish reading the books which I struggled with last year.
So for this month’s review, I have picked a controversial book: “You Can Heal Your Life” by Louise Hay.
I have always struggled with confidence, in particular, trusting my gut instinct and trusting decisions I have made. I can see how much this has held me back so on the 4th February 2018 I took part in a 30-day course called ‘Confidence for Success’ by the amazing life coach Emma Dawson.
Last year on Facebook Emma’s sponsored advertisement popped up on my page and I was intrigued. So I liked Emma’s Facebook Page and I joined her Facebook group "Bring Your Dreams to Life" I found the group was very inspiring and I loved Emma’s live chats. I quickly realised regarding my blog and the advocating I do that sometimes I lack confidence and doubt myself. When Emma advertised this course something spoke to me and I decided to enrol to build and nurture my confidence.
Last week I wrote a post about ‘Body Confidence with a Stoma' talking about my experience of this and sharing the results of the poll I produced a few weeks ago. 59% of the 260 ostomates that took part said they had low body confidence with their stoma. This surprised me so I thought I would write a post sharing some tips that helped me improve my body confidence.
I would like to say that this does not happen overnight and I had to actively work on this part of myself. I was fed up of hating my body and how this low self-esteem seeped into every area of my life. Self-esteem describes how we think and feel about ourselves, and usually refers to the value we place on ourselves as a person. Unpleasant or stressful experiences can lower our self-esteem and positive experiences and achievements can help improve it.