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TALKING TO PATIENTS ONLINE

On June 22nd, two members of the #WOMMeN project team presented at the Patients’ Clinicians Digital Interaction – Living with and beyond Breast Cancer conference held at The University of Salford.

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In this blog, Jo Taylor and Julie Stein Hodgins share their experiences.

Jo: I was invited to talk at a conference today at Salford University “Patients’ Clinicians Digital Interaction – Living With and Beyond Breast Cancer ” #beyondcancer15

My presentation considered this topic from the patient’s perspective.

It was an interesting day starting with an intro from the Chair Prof Ziv Amir who looks at committees/networks for rehab for people affected by cancer. Prof Shahid Ali talked next who is a GP and Prof of Digital Health involved in empowering patients and leading patient centred care using technology (Vitrucare) http://www.dynamichealthsystems.co.uk/vitrucare-supported-selfcare.  Very refreshing information from a professional that is showing how we can use digital health to manage our own health and show that it does save time and money from the NHS point of view.

I talked next about my web site www.abcdiagnosis and how I created it, how I interact with people using social media and living with secondary breast cancer.  I also discussed #BCCWW – Breast Cancer Chat Worldwide – and how 4 of us created this. I talked about what I was trying to do with creating a breast reconstruction app and various other connections and collaborations, as well as the mammogram project I’m involved in – #WOMMeN with Salford University.

Jo conference

Julie Stein Hodgins and Dr Leslie Robinson discussed about social media and the #WOMMeN project to create on line networks. Sarah Bodell and Angela Hook also talked about their app Occubuzz an occupational therapy app and how to use this for patients to help empower them to feel better, exercise and all around health benefits. Dr Stephen Hague talked about a new blood test they have produced to look at cancer diagnosis and genetics and how this is helping to change cancer diagnosis and treatment. Prof Diana Kloss (MBE) talked about patient confidentiality, consent and duty of care. Break out sessions discussed how we were all going to help make these things happen in the NHS.

Ther are big changes afoot with social media and getting professionals interacting with each other AND with patients.  Exciting times ahead but changes that many will not like but will have to do to keep up with how social media is working in personal lives and in the workplace.

Jo Taylor

http://www.abcdiagnosis.co.uk Contact Jo on Twitter @abcdiagnosis

Julie: Did you ever get that cool buzz when something has gone really well and you are taking something good away?

Today this happened to me. My colleague, from the University of Salford Leslie Robinson put a few slides together, in her own modest way, and asked me to deliver a presentation at a conference…Patients’ Clinicians Digital Interaction – Living with and beyond cancer. You can follow the tweets posted on #beyondcancer15

Heard a really brilliant GP from Bradford (Prof Shahid Ali) share how he is engaging with patients living with long term illnesses. They have a website/App (Vitrucare) that they can record their medical info which shows on a dashboard for the GP practise to monitor, thus any glitches and the patient can be invited for a review…30mins or 45mins long as required! They also respond via secure email to queries within 24 hours so that the patient does not ‘Google it’…i.e. look elsewhere for the information. How good is that?

I followed Jo who told us about her journey and how she created www.abcdiagnosis.co.uk. My presentation was titled, ‘Using Social Media to support patients’. Turns out most of us in the room had a ‘social media’ account. Some use the same name on social media as their HCPC registration. Nothing wrong with that, I behave professionally all the time.

Julie Some

There are many peer support groups for patient to patient and also health professional to health professional on social media platforms. Only one or two health professional to patient sites; Macmillan and our own #WoMMeN project. Some professions have already got Social Media (SoMe) guidelines. The Royal College of GPs encourage the use of SoMe in innovative ways to engage patients! Social Media includes web based platforms that are easy to share content with others. Facebook is just one example. Also think Linkedin, Google Circles, Netflix and Mashups!

There are challenges to using SoMe with patients or clients but that is where people are so we have to go there. Overarching principles for good practice in the SoMe space would be…the intent is good; the consequences have been considered; potential for harm has been mitigated and remember no site is truly private.If you wouldn’t say it, don’t write it!

I have come away feeling that the WoMMeN project definitely has a place and I believe an App is the way to go, sticking with the asymptomatic woman. But can an App allow 2 way conversation?

Julie Stein Hodgins

Contact Julie on Twitter @JulieRSH

Thanks to both Jo and Julie for presenting at conference but also for these contributions to the #WOMMeN blog.

I have never had any interaction about my own health with a health professional online or on social media.

Have you talked to your GP, consultant or another health professional online or via social media? 

How did it go? 

Do you think that this is ‘the way to go’?

Mammography experience

Posted June 12th 2015

Thank you to Liz Morton for sharing candidly her experiences of screening in WOMMeN’s latest blogpost. Liz is a member of the WOMMeN hub user design group. This group is open to anyone interested in helping design a ‘woman’ focused interactive hub related to breast screening and the experiences of breast screening.

Liz Morton June 2012

I have always been aware of the importance to check my breasts regularly for lumps, puckered skin, discharges etc. Perhaps because being and staying healthy was an important facet to my life.

In January 2010 I received a letter from my NHS trust to say I had been included in a trial for Mammography. The letter explained that ordinarily, women are called for a Mammogram from the age of 50, up until the age of 70, but in Solihull the age range was being extended to include women from the age of 47 to the age of 73. I was 3 weeks away from my 48th birthday.

I had mixed feelings – I knew that screening was something we should attend, however listening to other people talk about how uncomfortable it was to be screened – and ladies I knew had likened the process to having your boobs flattened into a kind of press. Notwithstanding, there was no way I wasn’t going to attend, so off I trogged to Solihull Hospital to the temporary portakabin housing the Mammography team and equipment, located near the staff car park.

The staff were very welcoming, and explained what would happen during the screening process. I felt quite relaxed waiting for my turn and engaged in a conversation about the screening process – and enquired about how many women don’t actually turn up to their appointment, which felt, to me at least, worryingly high.

The actual mammogram was an easy and comfortable process, the mammographer treated me with dignity, even when I suggested she manoeuvre my breasts into the right position to ensure she got the best image for the screening process.

A couple of weeks later, a letter arrived to say that everything was ok and I would be called back in 3 years. All good.

Just before my 51st birthday – again in the January I was called back for my next mammogram. No fears this time, back to Solihull where there was a little bit of snow on the ground and it was bitterly cold. Again, the process was very straightforward and comfortable, I was made to feel at ease and didn’t think there was anything to worry about this time – I had still continued to check my breasts regularly and there were no lumps, no puckering, nothing I was worried about, no obvious symptoms – of anything.

Around 2 weeks later, a letter arrived just as I was leaving the house to go to a meeting. I took it from the postman and put it in my handbag. Arriving at the meeting a good 15 minutes early I opened the letter and couldn’t quite believe what I was reading – That I had been recalled to Coventry Hospital for a further mammogram and possibly a CT scan and even a biopsy. But the actual appointment shouldn’t be longer than 1 hour. Fear gripped at me, nothing in the letter indicated anything really, other than it was a recall. I texted my GP who is also a family friend – saying I was trying not to worry or be hysterical, but could she help me understand why this might be the case. She called me and explained it could be anything and not necessarily breast cancer – cysts, microcalcifications, the need to do another image etc. I calmed down and stopped worrying until the day of the appointment, 5 days later.

On the day, I drove to Coventry in good time for my 10:00am appointment, parking was a nightmare, so I abandoned my car on a verge and spoke to the parking manager who assured me it would be ok to leave it there. I left my briefcase in the car, packed with notes about a new client in readiness for a conference call with my colleagues that I had arranged for 12:30.

Once I found the breast unit (map on the back of my referral letter), I checked in and sat and waited along with a few other ladies. We didn’t really speak to each other, perhaps each feeling anxious and tense at what might unfold in the next hour.

I was called to a room and spoke with a breast nurse, who talked to me about breast cancer (wait – I’m jut here to get re-imaged right?, there isn’t actually anything WRONG here, its just the image wasn’t quite right was it? RIGHT? RIGHT???). She explained to me that there were some areas in my breast (which breast I asked?) in my right breast that merited a second look, and that was what today was about. Being the sort of inquisitive person I am I asked outright if I had breast cancer – I’d now started to put 2 and 2 together and came up with 50 – why would she be counselling me about breast cancer when it wasn’t even proven that I had it?? Puzzled, but more disconcerting, “they” knew something I didn’t.

Back to the waiting room and then into a further room for a CT scan on my right breast. I was talking to the sonographer all the way through and she told me that there were 3 areas of concern, two in my breast ducts, and one in the tissue. I sat in the waiting room, awaiting my fate. Was called back again and they said that after looking at the scans, they would like to do a biopsy. Alarm bells……..

The biopsy itself was pretty painless, a bit of pushing and shoving in my breast and a bit of repositioning from time to time. It seemed to take ages, and afterwards, I sat in the now empty – bar one lady – waiting room. We started to chat and both said we felt concerned, as everyone else had left and here were us two – troublesome twins. We both had come to the appointment alone and were trying to determine the merit of having a partner or a friend with us, or doing this on our own. I think on balance we both agreed that we were better alone!!!

I was called back and the team said I would need to have my final biopsy under mammography conditions – the area of concern was deep and awkward to reach under CT, so off we went to the mammogram room. The ladies were very kind and could sense my worry, and although they remained totally professional and didn’t comment when I asked if it was cancer, I knew. I had been there almost 3 hours, had missed my conference call, and hadn’t been able to text the people concerned as there was no signal for my phone in the hospital. I left the hospital with an appointment for the following week – Valentines day, at Solihull Hospital, got in my car and picked up what seemed like a dozen messages and texts from my husband and friend asking me to call them to let them know how I had got on.

The rest is history – I was diagnosed with Stage II, Grade 3 HER2+, ER+ breast cancer. I had a mastectomy and reconstruction in March 2013, started 8 cycles of chemo in May 2013 (4 x Epirubicin and Cyclophosphamide and 4 x Taxotere), followed by 18 cycles of Herceptin, and currently 18 months into a 5 year term of Tamoxifen.

What I will say is that I am a massive advocate of screening – notwithstanding it picked up my early tumours, the cancer had not spread to my lymph nodes and I was able to be treated promptly. The more worrying thing is that I had no symptoms, did not feel unwell and had no concerns. But yet I had breast cancer.

I think having an earlier image to compare with the one in January 2013 was a really good thing for me, and I also think that had I not gone for my screening, then the situation may be very different. I know there are no guarantees with this insidious, destructive, sly disease, but I feel reassured that screening gave me a better chance of dealing with breast cancer.

I would urge all ladies eligible for screening to take up the opportunity. I will even go along with you if you need someone with you. If one just one more lady goes for screening who originally didn’t intend to as a result of this work we are doing, then that’s a massive bonus in my eyes.

Have you been called for screening because of the extended trial? What have your experiences been? 

Has having someone offer to go with you, meant that you have attended for screening which you would not have done otherwise? 

If you received a letter for a second referral, what would you want to know?  

Liz is @solihullmom on Twitter.

If you are interested in becoming a member of the user design team or in writing a blog about mammography to be posted here, please email the project leader Leslie Robinson at l.robinson@salford.ac.uk  or visit the WOMMeN Facebook page at https://www.facebook.com/groups/WOMMeN/