Creating a beautiful clinic waiting room

Last night I attended the ‘big reveal’ of a project that I’ve been involved in as a patient advocate for the past 18 months. Clinic 8 at Charing Cross Hospital is part of the medical oncology clinic and patients and carers can spend hours here day after day waiting for appointments with consultants, scans, radiotherapy or chemo. It was a dull room with no natural light, uncomfortable chairs in a row, blank walls and a reception desk that you couldn’t see over or if anyone was there. Bleak and certainly not where you’d want to spend any time! We, a group of patient advocates, asked for some artwork and a redecoration…. the plan got bigger and with the help of Kelly, a research nurse, we got approval to commission an artist to change the space.

Extensive surveys of patients, carers and staff have been done before the changes and more surveys will be done when the new chairs are in place… hopefully we can prove that art has a place in a medical environment and helps patients and carers during a difficult time.

Thought I’d share some pics with you…. So proud of David’s healing meadow of flowers and butterflies.

“The Butterfly Project is the creation and installation of 250 ceramic pieces in the patient waiting area of the medical oncology clinic at Charing Cross Hospital. The artist, David Marques describes the concept of the artwork as “Science with care… and how together this can help us find new treatments, kinder treatments and more people surviving cancer. It takes a partnership between everyone to make this happen”.

The butterfly wing shape was inspired by the DNA helix and each white butterfly represents a patient coming to us for treatment. The healing meadow of flowers represent the therapies patients receive during treatment as well as the people they meet along the care pathway. The butterflies take on the patterns of the flowers and fly on their way.

David is an accomplished ceramic artist who creates beautifully intricate work for both large-scale art installations as well as collectable objets d’arts. Born in Switzerland of Portuguese origin, David worked for many years in Geneva’s watch and jewellery industry before graduating from Central St Martins in 2013 with a 1st Class BA Hons in Ceramic Design. In 2014, David was shortlisted for a University of the Arts London Creative Award. In the same year, he was selected for a studio at London’s renowned creative business hub, Cockpit Arts, where he continues to work on private and public commissions.”

Link to one of the articles from last night –…/new…/news_5-2-2016-16-43-25

Oooh and they’re making some wallpaper from the design as well as screenprinting it onto some glass doors that will appear at different spots around the oncology clinic, research and wards.

Visiting Andi and Washington DC

It’s difficult to describe my trip to Washington DC without gushing too much so I’ll try to make it brief (ish).

It wasn’t about visiting Washington DC.   Exploring the City during my trip was a bonus but it was more about who I was exploring with.

My trip was booked over 9 months ago.  The reason was to see a very dear friend of mine.  A friend who I had (until this trip) only met in person once at the C4YW Conference in Orlando.  But someone who I consider to be one of my best friends.

New Years Eve 2013/2014 I had been driving up to visit friends Nr Cambridge.  My phone beeped to say I’d got a Messenger message from Andi.  I glanced at the message and knew I had to pull over to read it in full.  Andi told me that she had just seen the oncologist who had told her that her recent breathlessness was because she now had a metastases of Phyllodes in her lung.  We exchanged several messages and agreed that as soon as I got home tomorrow we’d Skype or Facetime.  In the meantime I knew I had to do some research into spindle cell sarcoma mets to lungs (preferably from a phyllodes tumour, if the research existed).  One thing I was sure about though was what the oncologist wasn’t taking into consideration was the strength with which Andi has dealt with cancer for many years.  Andi was first diagnosed many years ago and has had continued recurrences and many many surgeries.  There was a point in 2013 when she was ‘growing’ new tumours at a rate of approximately 1 every 6 weeks!  Every time they’d appear, she’d face it head on, deal with it, the surgery and the ‘fear’ and pick herself up, put on a fabulous pair of shoes, lipstick and a smile and be back out before anyone knew she’d been in hospital… some occasions having surgery between dropping her daughter at school and collecting her at the end of the day!

As soon as I got home, I got the laptop fired up and spent an age looking through research papers and medical journals. Pah!  Found it.

My message “Re the 1 yr!   Soooo not happy about them saying that.. all the info I’ve looked at for spindle cell sarcoma mets in lungs is 80% 5 year survival after resection.  And that means you’re in the 80% of the 80% with a 126 year survival!!!   I mean who am I going to have to misbehave with when I’m really old and cantankerous?  YOU!!!!”

Shortly after New Year, Andi spent a great deal of time in and out of hospital receiving treatment.  Through it all, Andi faced it head on and to most people ‘watching’ you would assume everything was a breeze.  But there were truly rough days and only Andi (and her family) probably know the full extent.  However what fabulous and amazing people like Andi have in spades, is friends.  She had lots of visitors who stayed with her, looked after her and her family, shopped, cooked, cleaned and kept her company.  Our friend Trish, turned up and surprised her on her first day of chemo in the hospital – there’s a great video of Andi’s utter surprise and delight at such an amazing gesture for Trish to do this.  I hated being in the UK.  Too far to turn up briefly and I wasn’t sure that this Brit who’d only met personally once was the right person to be there to take care of things for an extended time.  All I could do was send cards, chat online and make sure she knew I cared.

In August last year Andi was over the worst of the chemo but still had some way to go… and British Airways kindly sent me an email with suggested flight destinations, including to Washington DC.  Well what’s a girl to do?

I found flights that worked and messaged Andi to check she’d be at home over the Easter break.  If I’m honest I didn’t give her much chance to say ‘No’ as the flights were booked very quickly!  For the intervening 8 months friends on Facebook will have been a little confused about several posts that simply have countdown numbers in them – 135days, 4hrs, 13mins and 44seconds etc.  But these countdowns were the exact timing until I touched down in Washington DC and knew that shortly after we’d meet again.

I loved our countdown.  I also loved the excitement that this brought with it.  The evening before I flew out was the first time I thought, eek what happens if we don’t get on?  (Turns out Andi had the same thought).

US Flag

I walked through the gates at the airport to be greeted by Andi and her fabulous daughter, Sam and two mahoosive hugs.  And then the laughter started!  For my entire trip we laughed.  Laughed until we cried (or as one of us put it, “peed, just a little”!).

Here’s a few photo highlights from my trip:

DSCN1830 We took a trip into Washington DC to do some site seeing…  Love this picture of Andi and Samantha.   So cute.

Washington9Washington10Incredible iconic buildings in Washington DC.  Stunning city with some truly inspiring monuments.  The respect and acknowledgement to ancestors who have fought for the US is heartfelt and real.

Washington6Washington5DSCN1844Such a special bond between Mum and Daughter.

Washington4We came across a park with some art and sculpture… errr anyone explain the one on the right?  No?

I was also taken to the place ‘where my people first landed’, Jamestown.

Washington7Samantha was somewhat bemused that I knew little of our British history in the US but I don’t recall being taught much about it at school.  Were we?

And Williamsburg where the whole town has been ‘preserved’.  History scenes were acted out in the streets and you could visit the stores who were still making hats (milliners) bakery (breads), silversmith etc using the original tools and working as they would have in the past.

WashingtonBUT as I said earlier, we didn’t stop laughing all week… on our tourist days we were also giggling at so very much.

Washington1Cheeeeter!  (Andi and Sam will get that!)

We found a maze and some stunning gardens.  What a shame I didn’t capture our, ahem, hide and seek on video!


We also discovered that Andi has a little difficulty working hand-dryers.  Sadly we didn’t get her ‘air stewardess’ impression on video.  We did wonder what it’d do to your face in a highspeed hand dryer.

During my stay we had a LOT of games of Clue (the US version of Cluedo.  Samantha insists that anyone playing this game has to play in a British accent and was delighted that a real Brit was going to play.

Andi in her best English accent.  The call of the Peacock also came in very handy when I got separated from them in a Smithsonian Museum.  I heard the call from a long way away and ignoring all the people looking oddly at me & Andi, knew it was for me!

Andi’s husband Lane was on tour with the Washington Capital Ice Hockey team and only got home on the evening of PJEaster (Easter Day in PJs).  Poor chap returned to find us 3 in our PJs, playing Clue, hair unwashed, no makeup and giggling like a bunch of crazies at daft and silly stuff.  Only 10 minutes before he walked through the door, Andi had been tapping her forehead with the end of the pencil thinking is it Peacock or Plum in the Library?  Only she missed and tapped the pencil into her eye.  Sam and I couldn’t stop laughing and told her in no uncertain terms that it was self-inflicted!

A bandage (err headband) was found.  Andi put this over her eye, glasses and pencil propped into the bandage and continued playing.  Well actually I think we were still laughing at her when Lane walked in!

Andi ClueOn the Monday, Lane wasn’t working so the four of us headed in to Georgetown for a wander and lunch.  We found a fabulous spot by the river.

DSCN1897How fabulous is this family?

DSCN1895Oh and me and Andi.

After lunch we headed to Iwo Jima Marine War Memorial.Washington8And then on to see where Lane spends his time with the Washington Capitals, coaching them utterly brilliantly.

Washington3In the training room!

Samantha, the uber fabulous gymnast

and Lane

My final day, we went along to watch Washington Capitals training session.  What an amazing experience as a newbie to understanding the sport.   Incredibly fast and so skilled.  I loved that anyone can attend training sessions and see their sporting heroes working so hard.  If only we did this for our sports in the UK, youngsters wouldn’t assume you can rock up on a Saturday and earn a fortune without knowing about the many many training hours our sportsmen and women put in.

I was so very very sad to be heading off to catch a plane home.  I wanted to put Andi, Lane and Samantha in my pocket and bring them home with me.  It was so very weird being on a plane and not laughing and giggling or doing silly stuff.

Ooh and here’s your bonus video of Samantha singing.  That child has such a beautiful voice.

What an amazing trip.  Amazing in so very many ways.  To be part of such a close and incredibly supportive family for just a short moment in time.  We all know that laughter is the best medicine.. we filled our bathroom medicine cabinets this week.  Loved my time in Washington DC but most of all loved my time with the family.

CharlieChaplin Laughter

My Health Update

Well there’s good news and bad news…

The good news is that I had my 6 monthly ultrasound and chest x-ray and no sign of any lumps of mets from Phyllodes.  That’s the good news.

I also met my new consultant at the Royal Marsden.  Lovely chap who’s just returned from working in the US.  He understood the frustrations with a rare cancer diagnosis and I was delighted that he’d taken the time to read my notes and know about ME.

He kindly spent time with me chatting about how I’d been and asking if there was anything I was concerned about.  I told him that my boobs were still very painful (they always have been, but so much worse since Phyllodes, however probably nothing to be overly concerned about as I have such a good follow-up regimen).

I also showed him a rash I have had – I only showed him the rash on my wrists.  (The poor radiographer who had done my ultrasound a few weeks earlier had been utterly surprised by the rash on my boobs and armpits.  She looked genuinely shocked and horrified that I’d been waiting for several months to get a dermatology appointment…. more about that in the ‘bad news’ section.)  My consultant didn’t know what it could be but thought it may be auto-immune.  This then led me to ask him what he knew or suspected about a connection between Phyllodes and auto-immune illnesses.  His response **raised eyebrows** “that’s very interesting, why?”.  I told him that within our Facebook Phyllodes Support Group we had, and are still running, a poll asking members if they (or family members) had been ever been diagnosed with an auto-immune disease.  Although only 150odd people have responded there’s a big percentage that have a link.  Auto-immune disease is a spectrum of disease though and covers psoriasis to multiple sclerosis.

A good explanation of auto-immune disease is:

Autoimmune diseases are a large group of conditions. They include

Rheumatoid arthritis
Multiple sclerosis
Inflammatory bowel diseases
Skin conditions, such as psoriasis

If you have an autoimmune disease, your own immune system attacks your body tissues. Normally, our immune system protects our body against infections caused by bacteria, viruses and other parasites. It recognises when something foreign enters your body and can usually get rid of it before it causes you any harm. But if you have an autoimmune disease, your immune system can make mistakes. Your immune cells start to attack your own normal body cells.

I left the Royal Marsden feeling assured about my Phyllodes health but also that they are assisting me and others diagnosed with Phyllodes in researching and answering questions for our Phyllodes Support Group.  My consultant has subsequently emailed me to let me know he has chased the researcher who has a list of ‘basic’ Phyllodes questions to answer that I sent in a while ago.  The answers to these questions will allay many fears for newly diagnosed Phyllodes patients.  As it is so rare and there is little/no clinical research to rely on, I have suggested that they caveat any answers of concern with ‘in the experience of Royal Marsden’ or ‘to the best of our knowledge’ etc.  It would be good to have some answers on behalf of the UK sarcoma medical profession.  It is then aimed that the same questions will be put to medical professionals in the US, Australia and Asia.  All four sets of responses will then become available to new members of the Phyllodes Support Group.

My consultant also advised in his email that he’s asked the research team to look at any links between Phyllodes and auto-immune diseases.

The bad news…

…back to the rash.

At the end of October the soles of my feet started to really itch.  Initially there was nothing visible but soon there were small spots and dry patches.  I did wonder if I had fleas or bugs in the carpet.  I wish!  Next a sore angry rash appeared on my wrists, the palm of my left hand and both ankles.  I spent an age hoovering and rehoovering carpets, cleaning, dusting and generally convinced that it must be bugs.  Convinced that the spread to my hands and wrists must be because I’m scratching my feet.  I have been, as I’ve previously on my blog, very tired or fatigued for months/years but it had been getting worse. I know most of you see my facebook posts about my playing of tennis and going out… but you don’t get to see the posts that say I’m having an afternoon nap and didn’t wake up until midday and back in bed early or staying in most evenings.

Back to the rash.  By early November I could cope no more.  It sounded ridiculous but I was on the brink of tears trying to get a GP appointment asap for a ‘rash’.  I wasn’t sleeping well as the itching was so much worse at night.  My visual migraines returned and headaches for fun too.

My GP looked at the rash, said she didn’t know what it was and referred me to a dermatologist.  A few days later she called to say that the referral had been rejected and I needed to try a rash cream.  After a week of slathering myself in the cream, the rash had just spread and was as red and raw, if not more, than before the cream.  I booked another GP appointment.  This time she referred me again with a stronger note and saying the rash had now spread to my chest, armpits, groin, crook of my elbows and crook of my knee as well as my bellybutton… so basically anywhere that gets hot!

A few photos taken at the beginning of December:

LP - December

I waited… and waited… and chased up my appointment… and waited… and was told that my referral hadn’t worked in the system… had to chase my GP to do it again… and waited… and waited… and then called my GP again (in tears)… and waited… chased the referral service… who referred me back to my GP… who referred me back to the service… I cried… who then took pity on me and gave me a reference number, my secret NHS booking password and the number of the dermatology practice… I called them and was told the earliest appointment was over two months away… I booked it… put down the phone and cried again.

I know it was ‘just a rash’ but it F’ing hurt and believe it or not I was worried about the rate at which it was spreading.

I missed an ex-colleague’s funeral. Although the GP had said it wasn’t contagious, she didn’t know what it was and I couldn’t risk attending a funeral where other cancer patients may have compromised immune systems.   I’m sure Ally would have understood.

I was wanting friends, who’s daughter had been hit by a car in October and were ‘camping’ out in my local hospital at her bedside, to spend an evening with me so I could cook a homemade meal for them.  Again I was too scared that should this be contagious I’d make their situation worse just because I’d like to cook for them.  In the end I prepared a Friday night Indian takeaway meal of curry, dahl, naan, pilau rice, bhaji, poppadom, wine and beer.  The food prepped and cooked with me in latex gloves.  I also made some homemade soup for them for another night.  I did seem silly asking them to call round on the way home from the hospital to collect it without inviting them to stay.  I didn’t want to take the risk.  I’d never forgive my selfishness.

Apologies to anyone else I’ve not seen, rain-checked or not taken up some fun outing but I hope now you’ll understand why.

Just before Christmas I again called the GP and this time insisted on seeing my old GP at the practice, who’s been my GP since the 1980s.  He understood why I was so upset.  Looked at the spreading rash, he also said he didn’t believe it was contagious but didn’t know what it was.  He then wrote out a prescription that meant I had a drug that not only managed nighttime itching (generally eczema) but also had a sedative in it.  However he didn’t think it would cure the rash.  What a treat on 23rd December to have sleep!

Finally, 10 days ago, my appointment with a very kind dermatology specialist arrived.  I should have taken photos at this stage – definitely the worst time.  Diagnosis took just a few minutes.  Her opening line was “oooh I think I know what it is.  It’s very rare and you seem to have a severe case”.  (Oh joy another rare thing for me then!).  After consulting the computer and getting a second opinion from a colleague she told me that I’ve got an auto-immune disease, Lichen Planus.  So far my Lichen Planus (LP) is only external.

She did think that the LP may be caused by something else wrong in my body which has caused the LP to flare.  Blood tests ASAP.  Possible damaged liver or hepatitis.

I left with a prescription for some uber moisturiser and a really strong steroid cream.  She was concerned about giving me oral steroids as apparently what would be required for LP is super strong, has side affects and may be something that I have to continue to take.  So creams first.

I felt relieved to know what it was and had full confirmation that it’s not contagious.  But scared as to what it may be disguising.

As the itching was still horrendous (but being treated) my original GP also kindly did a new prescription for the sedative pills so I can sleep.

So it’s been a crazy time.  Lots of time slathering moisturiser and steroid creams on my body.  For the most part the rash is less angry, the blisters are rarer and for the most part I’m just scarred.   The worst areas are where it started and first spread ie the feet and wrists.  Some photos from earlier today:

Lichen PlanusI’m worried about some new itches and spots on my scalp and mouth ulcers and spots.  From what I’ve read these areas can only be treated orally and if it spreads on the scalp may lead to permanent alopecia.

I’ve got my next dermatology appointment at the end of this month.  Hopefully the creams will have sorted the external spots and the other itching is only in my mind!  I’ll then get the results of my blood tests too.

I’m also feeling much better than I did when first I heard the name Lichen Planus, as I’ve found a fabulous support group on Facebook.  It’s been reassuring to ‘chat’ with others who’ve been diagnosed.  For the most part they talk about it taking months/years to clear and then returning some years later.  I’ve also read about it being incurable but manageable.  It was also been reassuring to hear that there are others who have loss of balance, visual migraines and fatigue – seems this may be something to do with what I’ve been experiencing.

I have been truly fed up though.  I’m fed up of being ‘rare’.  I’m fed up of having stupid and many symptoms.  I’m fed up of worrying about going to see my GP.  I’m fed up with trying to pick my ‘worst’ symptoms to tell the GP about rather than bother them with them all in the limited appointment time.  Nothing seems to be specific or fit into the box.  I hate being a GP botherer however I’m wondering if maybe I should have been earlier ie before LP showed up as a rash.

Anyway enough for now… thought you should know.

BTW I did email my Phyllodes consultant to tell him I’ve been diagnosed with an auto-immune disease.  He’ll be adding LP to his research.

So there you go… the good, the bad and the ugly (well that’s evident from my photos!)

PPI Group – Imperial/Cancer Research – Meeting

A fascinating meeting this evening of the Patient and Public Involvement Group from Imperial College and Cancer Research.

We meet regularly however often we discuss aspects that I’m unable to share with you so I don’t post a blog entry about every meeting.  However some of the tweets/facebook posts about upcoming events or opinion may be posted from Living Beyond Diagnosis accounts.

Tonight’s meeting was slightly different to our usual discussions.  In that many of the agenda items related to artistic and creative projects that it is hoped will support, aid and influence both patients and the public.

I am unable to go into the finer detail but wanted to share a little about the items and ask for your feedback.

Artwork in hospitals and cancer clinics.  An artist has been commissioned to produce some artwork for display in a very busy hospital cancer clinic.  Tonight he was able to share with us a few of his ideas of what he would like to produce and also to hear our feedback and comments on the proposed work.  His medium is ceramics and his aim is for the artwork to be uplifting for patients, intriguing and engaging for those who may visit the clinic often and perhaps to also be further dimensional to include some more medical references and in particular research and cells.

No mean feat ahead of this chap.

What a wonderful project… for him to create and of course for others to enjoy.

The discussions this evening were varied.  Some were very much for it being engaging and uplifting.  Some felt that if it had medical references to research and cells it may be too much in this clinic but others thought it may bring about discussion and hope.  We discussed where it should be placed.. or perhaps could it transcend both the reception desk and surrounding walls?  Perhaps to include some clever lighting?  There are many considerations and much planning to also ensure that no matter where you sit or walk within the clinic you can enjoy the artwork.

What would be your considerations?

Video Project.  We were presented with a video project that has been taking place over the past 6 months.  Video cameras were given to 9 women who had been diagnosed with breast cancer (some with secondary breast cancer).  Each women was asked simply to record whatever they liked.  Some did a ‘talking heads’ approach of short interviews to camera; others were determined to show their families and life living WITH cancer; most of them showed bad times as well as the good; living with side effects; what the treatment and drug regime was like; and so much more.

The videos have been sensitively edited (with each of the women involved) and the task of how best to use the honest and open footage to educate the public and also support and inform others diagnosed.

The aim is that it will become part of an art installation where each video is played continuously on 9 walls of a gallery.  Thereby giving the ‘viewer’ the opportunity to watch all or part of each journey.

It is also hoped to edit the footage (approximately 2hrs for each lady) down to a documentary length and to be able to get it onto the TV.

We also discussed the possibility of some of it being used for the training of people working with cancer patients.  Medical professionals but also HR/employers.  Perhaps in a similar way to the GP Training film that I was involved in that is now part of the London Deanery GP training.

Where else do you think this could be used?

I suggested that in addition to the current footage perhaps another video project might be looking at the 360* surrounding the diagnosed.  For example taking a point in time of the diagnosis (perhaps being told of cancer, the start of treatment, surgery dates etc) and asking the diagnosed to tell what that moment was like as well as their colleague, husband/wife, child, parent, neighbour, friend etc etc.  To demonstrate that cancer affects much more than the individual and allowing others to understand.

Portrait Project.  A fascinating project created and considered by a lady herself diagnosed with secondary breast cancer and recently told that she is now in palliative stages.  Her background is in visual media and she would like to share her journey through photographs.  HOWEVER not of herself but highlighting the wonderful team of medical professionals that have been part of her journey, have been keeping her alive and indeed for whom she is truly grateful.  She would like to say thank you and for others to know that a cancer patient’s journey is filled with teams of professionals who work together for the best outcome.

She has put together a team of photographers, videographers, editors and other talented people who will be responsible for capturing each and everyone who’s been involved in ‘keeping her alive’.  From the nurses, breast consultant, sarcoma consultant, oncologist, heart specialist, plastic surgeon, wig fitter, receptionist, cleaner, anesthetist etc etc.  They are asked (and with her guidance) that each portrait will show the person behind the white coat as well as acknowledge the work they have done.

It is aimed that this portrait project will be finished and on display in SW London in September of this year.

Tissue Collection.  At this point, I can’t tell you everything about this agenda item.  However I would like your opinion please.

A great deal of cancer research is carried out on tissue samples taken from patients via a biopsy or surgical excision.  Sadly not everyone knows how to donate tissue to research projects and, historically, consultants are concerned about having discussions about research with patients so this may be overlooked.

My question to you is at what point and with whom do you think you should have a discussion about tissue collection for research purposes?  Was it discussed with you?  How did you feel about it?

Are you aware that cancer cells change during a cancer ‘journey’ and particularly if it spreads to other parts of the body.  There is therefore huge value in tissue samples being examined from each part of the body affected and indeed researchers feel that this information will help guide to the best outcome for individual treatment.

Another taboo that needs to also be overcome (in my opinion) is that of tissue donation after death.  Researchers again have huge value in looking at the tissue of a deceased patient.  If they are able to compare the tissue with that taken from a primary tumour and again any secondary tumours, they believe this may also aid them in understanding cancer development and further treatments.

Would you give your specific consent to tissue sample being taken after you death?  When and how do you think it should be discussed?

Breast Cancer Lecture Series.  There next in the series – “The Secondary Breast Clinical Nurse Specialist: her role in breast cancer patient care.  6-7pm 15th July at Maggie’s Centre, Charing Cross Hospital.

These lectures are in an informal setting and after the talk you are invited, and encouraged, to ask questions of the speaker.  Please do pass on the invitation to others.  If you’re interested in attending please email Kelly Gleason as places are limited to approximately 20 people.

I’d love to hear from you about any of the points above.

Juicing and Sponsored Diet Update

Well there’s good news and not so good news.

The good news is that the juicing diet definitely works.  I had a weigh-in on Day 5 of the 7 day juicing plan and I’d lost the 3.4kg which (according to Google) is 7.49lbs.   Brilliant stuff and I thought wisely that should I continue to juice for the final 2 days that I’d drop even more.

In all honesty I probably did.  Friday morning when I was rushing around I certainly was feeling slimmer, my skin was great and my energy levels were increased too.  I weighed-in on quickly and have just done the calculations – a slight rise since Day 5 – but still a loss of 2.8kg on the plan.  So if I’d been following it to the letter for the past 2 days why hadn’t I lost any weight.  This may be Too Much Information for some of you… but even though it’s just juice and even though there’s nothing bad in it and even though I may be pee’ing a lot… there’s no roughage or fibre in the diet… if you know what I mean!

I’m hoping with some sensible eating of 1 meal a day (containing fibre!) and balancing this with juices twice a day that I can maintain a steady weightloss from here on it and retain the benefits of skin feeling great and better energy levels.  Depending on how this works out with planning, purchasing and making the juices as part of every day, I may change to the 5.2 diet but using only juicing on my 2 days.

The ‘not so good news’ is that on Friday I headed up to Norfolk for a weekend of partying and celebrating a friend’s 50th birthday…. this morning’s weigh-in isn’t so good!

As for my sponsored diet, there’s more weight lost which means more funds raised for the fabulous Penny Brohn Cancer Centre in Bristol.  It may not be much but every penny counts and I know they’ll put it to great use to support both people with a cancer diagnosis and those carers and supporters who also need their services.  So if you’ve not yet sponsored me, add your pledge to the post I’m Going Old Skool.


Haven – Fulham

This afternoon I was invited to an event at the Haven in Fulham.


During my journey I never contacted the Haven as I believed it was solely for people affected by breast cancer.  I understand it was once, but not anymore, not totally.  Great news for people affected by cancer to have another resource nearby to help them through and beyond a diagnosis.

The Haven is located just behind Harwood Road in Fulham, a few minutes walk from Fulham Broadway tube.  Housed in converted church which from the first moment of entry, feels comfortable and calm.  3423994_c6b1af15The interior of the ground floor hosts a reception area, a seated area and then on a slightly higher platform another seated area with plenty of sofas, a small kitchen on one side for people to get a warm cup of tea and the other side plenty of information leaflets, computers and books.  I understand that there are four floors in total in which there are a great number of consultation rooms, treatment rooms, a large group room and another for exercises.

The kitchen serves great delicious and healthy food at lunches on Monday to Wednesdays.  There are nutritionists available to offer advice and whom also run courses and phone consultations to those who want advice.

I was pleased to hear this evening that they are now open late on a Wednesday evening for people to drop into the Centre.  Whilst I understand that it’s hard to staff cancer Centres in the evening and weekends, I feel it’s imperative that more centres are available to those who are working or perhaps have children that means they’re unable to get away during the working day.

I was also pleased to hear the services are now being offered to people diagnosed with other cancers, other than breast cancer.

If you would like support or information, do have a look at the services offered at the Haven.

They also have centres in Hereford and Leeds with another one opening in Wessex.

Girls weekend

What an incredibly fabulous treat this past weekend has been. My flat has been super busy filled with fabulous people.

I have been playing host to my friend Jen who has flown in from Ithaca, NY, USA to in turn catch up with her old school friend, Susie. Susie was diagnosed a few years ago with a brain tumour. She’s an amazing lady and I’ve had the pleasure of visiting her when she was admitted to hospital in London – I was the ‘courier’ for the safe delivery of goodies such as garibaldi biscuits on behalf of Jen. From the very first visit we’ve had a jolly good giggle and I felt that I’d known Susie for years too! Susie and I have kept in touch via email when she went back to the ‘country’.

So in order that Jen could make the most of her short time in the UK and see Susie for as long as possible, I hosted the weekend for them both. Of course, selfishly it was also utterly brilliant that I could see them both and join in on the laughter, giggles and tears.

Poor Jen had a hairy journey though starting with the cancellation of her flight from Ithaca to New York! So, stalwart that she is, she jumped in the car and drove to NYC, stayed in a hotel for 2 hours (the most expensive hotel stay ever!) and meet her “connecting” flight to London Heathrow. Poor love doesn’t sleep on planes so was utterly exhausted when she was met by me on Thursday evening at Heathrow. She’ll hate me for posting this… but the ‘sleep-deprived arrival’ photo.


A short time for gossip and catch up on the journey home and cups of tea before collapsing into our beds.  Hehe Jen awarded me a 4.5* rating for my accommodation when I presented her with freshly ironed bedsheets, fluffy towels, hot water bottle and dressing gown… but I lost half a star when we could only find one slipper!

Friday was a late start, a lot of tea and gossip and then headed out to the tube station to collect Susie, who had set out early from the country to travel to London. A late lunch, plenty more tea and gossip and we headed into Victoria where we met up with another old friend of Jen’s from University for a quick drink. Susie and I then headed off to Waterloo to meet up with some friends of mine and to see Fascinating Aida.  What a total tonic that show was for us all.

After the show Jen met up with us and joined our party for dinner before heading home in a taxi and quickly to bed.

On Saturday morning I was first up and eager to try out my new waffle maker. When I stayed in Ithaca last year Jen’s daughter surprised me when she made waffles all on her own.  They were, quite frankly, blooming spectacular. No mean feat for a young girl and I aspire to be as good as Ruby one day. I had asked and she’d sent me her recipe.  The new waffle maker had arrived on Wednesday. I was ready to go. Inevitably I need more lessons to perfect the Ruby-Waffle but I did OK.  Enjoyed by us all over a lovely long breakfast with yet more pots of tea and coffee.


Saturday afternoon we’d arranged to meet another old school friend of Jen and Susie and another University friend of Jen at London Bridge. We set out and caught a train to Waterloo in favour of a sunny winter walk along the Southbank. Sadly full of tourists but a beautiful walk nonetheless. We managed just enough time to nip into an small art gallery enroute and see some wonderful pieces. We met up on time and then decided to see if we could get a coffee/tea in the bar up the Shard. We weren’t going to be paying the ridiculous cost to go up to the viewing platform on the 72nd floor and are quite content with the view from the 32nd floor. Only a short wait in line and we were on our way.


I think we also chose the perfect time of day to arrive as the daylight was leaving us and the London lights were beginning to sparkle. Looking down on London as the light changed was mesmerising.

IMG_4364I think, if you’re thinking of going to the Shard and to avoid the queues I’d consider booking afternoon tea for the princely sum of £35. Not cheap but if you time it right you’ve got your table guaranteed for the time of your tea, no queuing and a tip-top tea into the bargain. I think the 72nd floor viewing deck ticket at £25 for a timed visit is overpriced. For £10 more you’ve got an afternoon tea and an incredible view – who needs those extra 40 floors – London looks great from 32! (£0.35p/floor Shard -v- $0.31/floor Empire State Building).


After our ‘drinks with a view’ we made our way back along the Southbank, stopping only for a quick bite to eat at the best Pizza Express venue with views over the river to Londontown.

IMG_4422Exhausted we all fell into our beds shortly after making it home.

Sunday was a very slow start. Us all in our PJs, cups of tea in hand, chatter and breakfast. The reality was that the weekend was drawing to a close and still there was so much to say, share and listen. So very difficult sometimes to be true to what you want to say when discussion are held over Skype or the telephone at other times. As an observer to some of the conversation though I can see the true friendship between Jen and Susie that has spanned 40+ years since primary school, childhood friends and close neighbours. To listen to their stories about cycling to school together and the mischief that they caused and their shared experiences and adventures – magical and I was honoured to listen in. Never long enough to say it all but so very easy to see the love shared.

We drove Susie to Paddington to catch her train home, stopping briefly for a cuppa and final farewells. Jen came back with me for a while, a delivered English curry meal and then I put her on the tube to her brothers for a final 2 nights in London.

Given that Jen was on a different timezone, my constant fatigue and with Susie’s treatment, we all did remarkably well fitting everything in and to keep going. I’m know, like me, the others also slept well when they both made it home.

No matter how long it’s never long enough. However we’ve learnt to treasure every moment, every laughter, every view and every memory.

Pat Pilkington’s Memorial Service

What a privilege to have known Pat Pilkington.  We first met at Parliament at the launch of Penny Brohn Cancer Care’s national Living Well program.  There were many people at the event, from the Cancer Centre, other charities, the NHS, Government, celebrity and others, like me.  Pat made an impression not only because she looked amazing, as I later learnt she always did, but she spoke so warmly to everyone.

I returned to the Penny Brohn Cancer Centre for a Living Well retreat.  Pat, voluntarily, spent an evening with clients as part of the longer retreats and I once again was blessed to be in her company.  My retreat group sat comfortably in a lounge and listened, captivated by her stories.  She told us about the beginnings of the Centre, the inspiration, passion and belief.  Stories of her friendship with Penny Brohn.  Her love for her husband, Christopher and how she missed him since his passing.  Of her spirituality and beliefs.  She asked questions of us and listened to our answers.  She embraced all of us, our loves, lives and concerns.  Pat gave each of us her email address and invited us to correspond with her.  After a warm hug for all who wanted it, we headed up to our beds feeling an incredible sense of support, love and overwhelming admiration.


Today was Pat Pilkington’s Memorial Service in Bristol.  She passed away in August after being diagnosed with terminal cancer a few months ago.  I felt strongly that I’d like to attend to pay my respects to an incredible and inspirational lady who made a great impression upon me.  What a beautiful service, well planned with well chosen readings, music and words – wonderfully uplifting and which I felt reflected Pat perfectly.

Pat leaves a legacy of warmth and care within the Penny Brohn Cancer Centre that I’m sure will continue to be felt by clients attending the Centre.

Pat has now joined her husband Christopher, the love of her life.

Vintage Afternoon Tea – Fundraiser for Penny Brohn Cancer Care

Younger_China55-e1329345377325It was a pleasure and a joy to attend a vintage afternoon tea fundraiser this afternoon.  I have attended and benefited from the Penny Brohn Cancer Care Centre in Bristol AND believes in the importance of ‘Living Beyond (a) Diagnosis’ so it’s great to be able to support them.

A super splendid location, The Secret Garden on the top floor of the private members’ club, Shoreditch House.  When we arrived we were to walk around the edge of the bustling open air swimming pool… where ‘beautiful people’ swim!  Through a small doorway and we found ourselves in this delightful area arranged with tables laden with vintage crockery and tableware.  Pastel shades of bunting and flowers created an amazing setting.  We were also blessed with some glorious October sunshine!

Penny Brohn Cancer Care Vintage Tea 2013As we sipped our bubbles from champagne coupes (nice vintage touch!) we listened to the pop of balloons around us.  Each colour of balloon was a different price (£10, £25 or £40) and contained a little strip of paper detailing the prize won.  I am, as a consequence, looking forward to attending an Insight event at the Royal Opera House; drinking some Fair Exchange Merlot Malbec; and bathing in Wild Olive bathtime treats… but not (necessarily) all at the same time!

After a short time of networking and meeting new and familiar faces, we took our seats for tea.

Jessica Brohn (Penny’s daughter) welcomed us to the event, told us a little about her mother and Pat Pilkington, the Centre and why we were all here.  During the course of our tea, we heard from a lady who had also attended the Centre.  She who was able to share her journey with cancer and how she benefited from her courses at the Centre.

After tea, we had an auction with some incredible prizes that had been donated by Soho House, Cecily, Maire Weaver, Suranne Jones, Toby Whitehouse, and more.


Jessica then spoke again to update everyone on the national roll out of the Living Well project.  It’s been coming on leaps and bounds since it’s launch (see previous post) and I’m very excited that so many more people are able to participate in the magic of the Living Well courses.  I will be tweeting via @BeyondDiagnosis when new dates and locations are proposed.

A lovely afternoon and I believe, in excess of £5,000 raised for the Penny Brohn Cancer Centre as well sharing the awareness of the Centre and it’s valuable work for anyone affected by cancer.

Macmillan Cancer Voices Conference 2013

images-8As a Cancer Voice and patient advocate I attended the Macmillan Cancer Voices Conference.  This is held each year in a hotel at Gatwick and runs for 2 days with plenaries, workshops and networking.  The attendees are a mix of people newly affected by cancer (diagnosed or carer) together with some old stalwarts who are, like me, advocating for themselves and others.  Many of us ‘old guard’ sit on various other tumour working groups, networks, research, NHS or hospital boards, Healthwatch/LINk, charity or patient groups.  My aims in attending this conference is to be able to share my experience (and that of others I’m familiar with), contribute to discussions at workshops and also come away with more knowledge about new and ongoing projects.  I also like to take the opportunity to share with Macmillan projects that are underway or consideration by other organisations and that perhaps they could work collaboratively or in conjunction with these others rather than reinventing the wheel.

IMG_4092The agenda is, as always, busy.  Attending these conferences isn’t for the faint-hearted and for some can be difficult.

I hope you find my notes from the Conference useful (my additional comments are in italic):


Welcome from Julia Palca, Macmillan Trustee (Chairman of Board).  Julia explained that she joined CancerLink in 2008 after her own diagnosis.  CancerLink was taken over by Macmillan and is now known as Cancer Voices.

Why are we here today:

  • “You are at the heart of everything we do”
  • Cancer Voices tell us what people affected by cancer need and how they need it.
  • Your Voices are influencing changes in cancer.
  • Challenging times for the health service. We continue to fund-raise, deliver services and influence.
  • 2012 was the most successful for fundraising. £115m raised. £112 spent on people affected by cancer. 8,000 more people reached than the year before.
  • Big part of reach is our Macmillan professionals. 3,000 funded last year.
  • Influence and force for change work. e.g. free social care at end of life. Welsh care delivery plan. Northern Ireland cancer commissioning plan.

Specific examples of user involvement:
Early diagnosis. A GP will only see 8 or 9 new cancer patients a year (on average). We need to raise awareness for GPs and have developed ClinRisk Tool (QCancer Overview).  It has now been piloted in 500+ GP surgeries. Over 800 GPs attended training for early diagnosis.

Improve patient experience. We’ve been working toward: High quality communication patients and staff; Patients involved in decisions; and Coordinated care between settings.

IMG_4094IMG_4095NHS  National Cancer Experience Survey. Macmillan is working with partner organisations to improve on results. Cancer Voices and Healthwatch to co-create Macmillan’s guide to using the survey.  Copies can be obtained from BeMacmillan.

Campaigning for carers. 1.1m cancer carers in the UK. 50% don’t identify as carers or realise there is support available to them.

This month Macmillan are launching a new campaign to reach carers and also lobby care bill to strengthen and support carers.

Redesigning cancer care systems. Macmillan are encouraging user involvement working group as part of the programme of changes in the NHS care system.

Exciting programme ahead and a great deal of opportunities for patient/carers to get involved and improve care.


Neil Stevens VP of Skype – keynote session.

Neil described his own experience.  At the time of his diagnosis, he thought nothing of jumping on a plane for a day of meetings in Sydney and did this regularly!  He was focused, impatient, driven and busy.  Life was good.  At the young age of 43 he noticed a lump on his hip.  He was overseas on a business trip.  A local Dr told him not to worry.  He carried on with his business trip.  Back to the UK he sought more medical advice and scans.  Initially he was told it was nothing to worry about.  He was fortunate to have private cover and once again pushed for more tests.

Eventually he had a diagnosis – a rare form of sarcoma – extraskeletal osteosarcoma.  So he knew the name but little else.

The tumour was removed by surgery and he was back at work in 3 weeks.  His life returned to ‘normal’ as if it never happened.

At a routine scan 6 weeks later life however he was told that the sarcoma was back and now in his pelvis and lungs.  They stated that there were over 100 tumours in his lungs and told he probably had 18 months.

So he put on his business head.  After all he was driven, focused and able.  He became the Cancer Elimination Officer (CEO) of his cancer.  Neil said that he had to address the cancer in the same way he addresses any business problem.  He first gets all the facts and data (no small task when there is so little), he would then build a strategy to eliminate it.  He was sure he would be able to do so.

He’s fortunate that he had money and contacts to track down and seek advice from the world’s expert at Sloane Kettering in the USA.  When he met with them, the consultant told him ‘You can beat this’.  Neil said that hearing that meant he knew it was true.  Once again an incredibly positive attitude.

He started chemotherapy immediately.  He knew that there was no sign of activity after round 1.  He kept telling everyone he could that he would beat it.  He kept a positive mind.

The final round scans couldn’t find anything!

What he learnt was the power of his own mind. He’s very factual and needed information. BUT he knew he could take control and manage it. Neil went for counselling, took up pilates, changed diet, aware of power of his own body and mindful meditation.

The hardest part was telling the children. Macmillan helped.
“Ask all the questions and let the children talk.”

He knew deep down he could do this.  He knew that by addressing it as he would a business deal, he’d be able to command what he knew he needed and be in control.

He wrote a document justifying why Cyberknife should be used not radiotherapy.. he got it.
He found a trial in the US. He did a PowerPoint presentation of why he should get on the trial. He got it.

He’s now been back at work full time for a year.  He’s moved to a new role which is less stressful.  He believes fitness and Pilates played a part in his health.  He meditates whenever he feels worried or panics.  He’s learnt to keep perspective.

He did have a small relapse in June with tumours in his lungs however is now completely clear following surgery.

As with everything in his life, he wondered how he can use his experience to create change. “I was given cancer for a reason. I can do something with this.” He met with Ciaran Devane (Chief Executive at Macmillan)

Skype’s amazing and free and global. He works for Skype.  What if we built a tool that allowed people with cancer connect?

Now the Skype Buddy system has been built and is being piloted. The principal is to enable people affected by cancer to be able to talk to specialists (financial counselling, medical etc) or patient to patient or carer to carer.  (I’m not sure if there will be group discussions but hope there will be as it would be a great opportunity to have group chats on specific subjects with perhaps nurses or clinicians on the call too).

Digital advisory board for Macmillan that he’s putting together has representatives from the likes of Facebook, Expedia, Amazon etc.

What is Skype Buddy system?  Click here for explanation.

IMG_4093The system is being piloted currently and looking for people to get involved, use the system, provide feedback and evaluate.

Sign up for the Skype Buddy pilot here

At present the system appears to have a small number of cancers and a limited sign up criteria.  I wonder if this will be increased in order to match Buddies on better criteria.  I am an Imerman Angel whereby we mentor others with the same cancer diagnosis by phone, Skype, email, letter etc, as required.  I’m a little disappointed that when I spoke with a number of charities, NCAT and NHS representatives about the Imerman Angels some years ago it was dismissed as a crazy idea to ask people to use technology to speak to someone similar!  Hey ho, I guess time and mindsets have moved on.  Imerman Angels match us on a huge number of criteria including age, marital status, children and cancer.  Although it may seem excessive, I know that some of that criteria would have been critical in my journey.

I have offered my experience to this project as I have worked with IT online projects for many years and also the Imerman Angels system (which I continue to mentor for).

We need more types of cancer in Skype Buddy project so that there is perfect matches.  For example (and perhaps selfishly for me) ‘soft tissue sarcoma’ is not defined enough.  Sarcoma cancer can occur anywhere in the human body and issues that may affect someone with Phyllodes in the breast will no doubt be different to someone with an Leiomyosarcoma.

Skype Buddy is about 1:1 relationship.  I do hope this will open up to group chats on specific topics.

We also need to ensure the supporting Buddies are provided with good (ongoing) training.  They should also be provided with the ability to reach out for support for themselves.

We need to use technology better and use it as a key element of the broader strategy.

Neil closed by saying that his views of life have changed as he enters the 2nd half of his life:

Seize the day… Enjoy the day, your life, that moment, value it. Be present with people. Engaged with people. He shared with us a very powerful statement from James Dean: “Dream as if you will live forever and live as if you will die today.


We then split out into different conference rooms for Welcome groups.  The purpose was to meet other Cancer Voices and Macmillan team members.  After introducing ourselves and finding out what each of us had done in the past 12 months for Macmillan we discussed what do we want from the conference?  The main points from our group were:

  • Not reinventing the wheel.
  • Feedback on the projects we’re involved in.
  • Updates from the previous conference.
  • Sharing information, data and reports with others.
  • Working collaboratively to provide information.


Workshop – Improving Cancer Patient experience in the New NHS

Following an exercise to introduce ourselves to other Voices at our table and then a  ‘ice-breaker’/competition, the workshop began.

3. Mid Staffs and the Francis Report.  The final report and executive summary can be viewed here.
4. Macmillans’ work to improve cancer experience
5. Group Exercise – using tools to improve patient experience

Mid Staffs
Failings of Care at Mid Staffs – Robert Francis QC Feb 2013 stated “This is a story of appalling and unnecessary suffering of hundreds of people”. The priority of his report, he said, was not to find a scapegoat, but find ways of putting patients and the quality of care first.

  • Not just cancer.. of course the mortality of all illnesses was too high at Mid Staffs.
  • Waiting times for cancer patients to see specialists were far too long which meant that many people died where as they should have been saved.
  • Chronic understaffing on cancer wards. Lack of commitment to improving outcomes for cancer patients.
  • Obsession for reaching targets but not standard of care for living longer and better quality of life.
  • No rapid referral system to oncologists which should have been in place.
  • Lack of support for the clinician from the MDT surgeons.

Failings on cancer care at Mid Staffs

  • Not listening sufficiently to patients and staff
  • Failing to tackle a negative culture involving a tolerance of poor standards and disengagement.
  • Increased focus on reaching national access targets, achieving financial balance and seeking foundation trust status.

How do we know if patient experience is good/bad?
There’s the NHS cancer patient experience survey, peer reviews and several different areas.

  • Information and Support
  • Emotional Support
  • Holistic plan
  • Dignity and respect

Francis Inquiry Report recommendations

  • Transparency
  • Fundamental standards
  • Accountable
  • Compliance

Macmillan have devised

Value Based Standard is a set of behaviours that is practical developed by patients and carers.

There are eight behaviours in the Macmillan Values Based Standard:
1. Naming – I am the expert on me.
2. Private communication – My business is my business
3. Communicating with more sensitivity – I’m more than my condition
4. Clinical treatment and decision making – I’d like to understand what will happen to me.
5. Acknowledge me if I’m in urgent need of support – I’d like not to be ignored.
6. Control over my personal space and environment – I’d like to feel comfortable.
7. Managing my own – I don’t want to feel alone on this.
8. Getting care right – my concerns can be acted upon.

Sadly a great deal of these ‘standard’ points should be what we do every day as humans. Why do we need standards to ask a medical member of staff to remember to ask how someone wants to be addressed? Anna, Ms Wallace, Miss Wallace etc.
Common courtesy!!

What is the NHS Cancer Patient Experience Survey (CPES)
The survey was completed by over 70,000 people and covers care before, during and after hospital.  Does it survey the family of deceased cancer patients about their experience?

IMG_4085We spent a short amount of time looking at extracts of the Survey and attempting to work out where we might feel improvement should be focused.  The Survey results are lengthy and difficult to interpret.  There are many tips on doing so, such as look at the figures for last year and this year to see if there has been an improvement.  How does that Trust compare to other Trusts?  If many Trusts performed badly, could you Trust improve sufficiently to be hailed as the ‘gold standard’?

In the final minutes of the workshop we discussed what we might do as patient/carers/advocates to ‘encourage’ our local Trusts to improve, with measurable improvement and to be held account.

I had been booked into a workshop by Healthtalkonline.  Disappointed that they weren’t in attendance at the conference as I wanted to find out first hand more about their work, strategy and future plans.  Perhaps next year?


The first day of Conference ended with a networking opportunity via drinks and then dinner.  It is always a joy to meet up with friends at this Conference, many of whom I don’t see from year to year (except on social media).  This year the entertainment was provided by a singer who crooned his way through a whole host of fabulous tunes.  On our table we seemed to know all the words and were (I think) the first ones up for a little dance!  Great fun and perfect entertainment for this event as it appealed to pretty much every age group (the joy of Robbie Williams doing covers!).


The second day began with the second workshop of the conference.

Workshop – Commissioning the bigger picture

What is commissioning?

  • Purchase/buying services.

The theory is that we are all commissioners.

  • I’m buying for my needs.  I look for value for money, choice, what I need, who am I buying for, can we afford it and quality.

Health service commissioning is similar. It happens all the time. Some stuff will be bought every week. some things might be purchased for special occasion.

The commissioning cycle.
Assessing needs -> Needs assessment -> Planning -> Specifying -> contracting -> evaluation.

Clinical Commissioning Groups (CCG) now do the ‘buying’ of services in the new NHS.

  • CCGs are a group of GPs that come together to form a group to commission services.
  • No boundaries are set as to how many GPs are required or the maximum number either.
  • There are now over 200 CCGs.
  • £100bn is the NHS budget and £65bn of which goes to the CCG.

Do GPs know what to buy?  How are these different CCGs going to ensure that nothing slips between the geographical groups of CCGs?

Kings Fund video – An alternative guide to the new NHS in England.

Sadly we didn’t get to see it as the broadband was too slow.. perhaps it should have been downloaded prior to the conference to play locally?

We then worked (as best we could) through picture handout (final slide of video below – click to enlarge).

Screen Shot 2013-10-08 at 14.43.54

All organisations involved have a duty.  Briefly, who is involved?

  • Public Health England – more proactive, awareness and prevention (sit within the council – local government.
  • Social care – care of the elderly, supporting people with disabilities, someone post cancer treatment needing assistance at home.
  • Health & Wellbeing boards – brings together main leaders in particular area.
  • Healthwatch – responsible for supporting public voice in monitoring health and social care locally.
  • Cancer Commissioning.  Commissioning Support Units support the CCGs and, in the most part, are made up of the original ‘commissioners’ in the old NHS structure.

HOWEVER one of the significant rules for CCGs is that they have to engage with members of the public.

Most of these are linked to the clinical senates within the new strategic clinical networks

How can you influence what is happening locally?

  • Clinical Commissioning Groups,
  • Patient Participation Groups – ask for information at your local GP surgery.
  • Hospital boards – find out which boards have patient representation.
  • Health and wellbeing boards making decisions about the needs of the local area.
  • Healthwatch/LINk

Or at a regional level.  Make enquiries.  Ask where you can be involved.

If interested in cancer commissioning get involved with strategic clinical network.

Not sure where to start?  How do you get involved?

Start with Macmillan involvement coordinators who can advise on where to go.

A useful 7 point ‘reminder’ for consideration and preparation before going into any patient involvement group or meeting:

  1. Define your preferred outcome and retreat outcome
  2. Consider the second position – what does the other person think?
  3. Be clear with benefits for both sides
  4. Present evidence and proof to reassured
  5. Think about your delivery
  6. Anticipate barriers or blockages
  7. Explore the barrier, empathise, re-present.


My final workshop of the conference was on a subject I’m passionate about.  I hoped to find out more about initiatives that Macmillan are involved in to improve care for people living beyond diagnosis.

Workshop: Improving Care for people living with and beyond cancer
Sandra Rowlands and Gloria Payne

National Cancer Survivorship Initiative (NCSI):
Survivorship being from the first thought of cancer until the last breath… not just post treatment or for a set period of time.

Recovery Package:
They showed a slide to show the numbers of people living with cancer and how they are projected to boom:

  • In 2010 there were 220,000 living with and beyond cancer.
  • In 2030 it is projected that there will 370,000 (1 yr survival); 570,000 to 990,0000 (1-5 yrs) and 1,290,000 – 2,680,000 (more than 5 years).

Often it is spoken about that the number of people living with cancer is set to double by 2030.

We are already struggling to accommodate the increased numbers of cancer patients.  If the numbers are correct we need to be collaboratively working for survivorship  – charities, NHS, local health, patient groups etc.

Another projected figure that truly is worrying is that by 2020 almost 50% of Britons will get cancer but 38% will not die FROM cancer.

38.7% of cancer survivors are of working age ie 18-64 = 38.7%  If this percentage of working people living with a cancer diagnosis continues at almost 50% of the population then it will have a huge impact because of needs and use.

Median survival times are improving. 1971-72 = 1 year whereas 2007 5.8 years.

NCSI 2010 Vision

There are five key shifts:

  • Cultural – focus on recovery, health and wellbeing.
  • Holistic assessment 9 individual and personalised care planning.
  • Self management – not clinical follow up.
  • Tailored follow up support.
  • Patient Reported Outcomes Measures (PROMS) not clinical activity.

My cancer treatment – gives national cancer experience survey results, and peer reviews, what hospitals are centre of excellence, mortality rates and survival rates etc.

New document prepared by the NCSI “Living With and Beyond Cancer: Taking action to improve outcomes 2013.

Also detailed is a Recovery package to support the new NHS commissioning and includes:

  • Supporting self management.
  • Physical activity and healthy lifestyle.
  • Information financial and work support.
  • Managing consequences of treatment.
  • Assessment and care planning.
  • Treatment summary and cancer care review.
  • Health and wellbeing event.

Macmillan Identifying your concerns checklist (white form) which is completed by the patient/carer and then returned to the specialist (holistic needs assessment).

This is then discussed and worked through with the Care plan which then has a plan of action etc.

There is an excellent piece on the NCSI website which explains each part and also has downloadable forms to adopt for good practice.

These are also available on the BeMacmillan website.

A useful tip for the Treatment Summary use was for the purpose of travel insurance.  As any cancer patient knows travel insurance can often be difficult and expensive to find.  Macmillan advised that the Treatment Summary form could be used as the basis of medical information for this purpose.  My own travel insurance is through InsuranceWith who specialise in travel insurance for people with long term conditions.

We spoke about the importance of Health and wellbeing events being held locally.  It was suggested that through the patient participation groups this could be set up and achieved.  Also to contact your Macmillan Involvement Coordinator to assist and perhaps provide some funding.

In order to sustain recovery, perhaps via self care with support and open access to the medical teams.  Shared care within the hospital environment and local, social and self care.  However complex cases must be managed through an MDT.

Care co-ordination and remote surveillance.  This needs collaborative working between the clinical setting and local/social care together with third sector organisations.

Walking for health is a scheme whereby walks are organised for free locally.  However could more be done.  If you have high blood pressure or a heart complaint you are entitled to some physical exercise grant/access however as a cancer patient there is no physical exercise grant/access available yet. This should be highlighted.. could you raise this with your MP?

Work and cancer – Often this is overlooked during treatment but essential for so many to be able to return to work in some capacity.  Macmillan advise people NOT to resign but to find a working solution with your employer.

Taking action – Innovation to implementation: Stratified pathways of care for people living with or beyond cancer- A “how to guide” was published by NHS improvement in 2013, and provides local teams with a very practical ‘how to’ guide based on the experience of the test sites.

What does success look like?

  • Improved outcomes for people living with and beyond cancer.

Can you help ensure that this happens?


The final plenary session, “A journey with a view from 3 sides of the fence”, and close for the Conference was given by Johnny Browne who was a GP, was a carer for his wife with cancer and is a Macmillan GP advisor for Northern Ireland.

Macmillan GPs special interest in cancer and their role is to promote best cancer care in their area/locality.  (Macmillan fund GP training and I would love to know which GPs had received the training so that if I was to move locality I could ensure my GP was familiar with cancer treatments.  Is the list of Macmillan GPs available to the public?  I can’t find it!)

In an attempt to point out areas where I think cancer care can be improved and looking from 3 very different perspectives:

  1. Do not forget as a GP the importance of self esteem and body image in cancer patients.
    1. Look Good.… Feel Better programme
  2. Diagnosing cancer early:
    1. Awareness
    2. Difficult journey, sometimes truly difficult, often symptoms mask as something else. Patients should be aware of symptoms and not be afraid or embarrassed to say anything. “If you were meant to be shot, you’ll not drown”
    3. Diagnosing Earlier App?
    4. Take pity on the poor GP who is like a penguin. Don’t refer too many patients. Make sure all your referrals meet the referral guidelines?
    5. All cancer studies ask “how many times you attended the GP before diagnosis”
    6. Most of the time the GP didn’t miss anything as often symptoms can be something else too… but we’re improving in seeing patterns.
  3. Improve communication
    1. As a carer I realised how important it was. Written communication and results. Between patients, medics, staff, GP etc etc
    2. How many people do you get in contact with during your cancer journey?
    3. Sensitivity, know your patient, what they want, how they should be addressed etc.
    4. Difficult for me as a GP to navigate the cancer journey. It can be extremely difficult for someone who is new to the NHS and ‘cancerland’.
    5. Treatment summary – Macmillan have developed this and it explains what happened to the patient. 3 copies – patient, hospital and GP. You can take this with you in the case of emergency, insurance or advice.
    6. Twitter showing how the world really looks from his photos posted. (Commander Hadfield)
    7. #hellomynameis campaign on Twitter
  4. Four things I’ve learnt about communication
    1. Health care professionals can do better.
    2. Look patients in the eye
    3. Difficult care pathway – passport to death. Talked to the patient to obtain the information rather than GO through a form. People and organisations have made the form more important than the patient – we need to change that back and hear the story rather than fill the form.
    4. 1 or 2% who give you bad communication can undo all the good of the rest of the team who give great communication.
  5. When you are going through you cancer journey, we don’t or are reluctant to complain.
    1. Perhaps it’s up to us to put the message out there or complain for others (factually, professionally and politely).
  6. Spread the word ‘Living with Cancer’
  7. I knew nothing as a GP nor as a carer but as a Macmillan GP I do… from you.
  8. All cancer patients need follow up and review.
  9. Travel insurance for those affected by cancer.
  10. Remember to live.. we did House building in Zambi, white water rafting and more… remember to Live.
  11. Don’t remove Hope.
    1. Why can’t you be one of the small survival percent.
  12. Spread the word about exercise
    1. Any exercise is good.
  13. Remember no one should face cancer alone.
  14. Keep a diary.
    1. Not of medical things but also happy fun memories and thoughts. It can be a lonely disease even with family and friends.

General Practice 2013.
Its changing. How does someone with a chronic condition have a relationship with the GP?  It’s in change or flux.

GP out of Hours 2013.
Important to a cancer patient to be able to access GPs out of hours. Could they avoid the A&E admissions?
But A&E is often not a great place for a cancer patient to be first hand and stuck on a bed in a hallway. We need to get quicker access.

In his wife, Lynda’s diary was a note:

“I hope you enjoy your new job with Macmillan to help people with cancer and to bring your personal experience to this”.


General comments for this Conference:

Time is short to discuss fully all the topics and workshops and listen to the plenaries.  Perhaps we should consider:

1/  Sending out by email or post preliminary information for reading prior to the Conference.

2/  All Voices are attending to participate.  I don’t think there’s a need for an ‘ice-breaker’ in each session.  It just wastes time and irritates those who want to get on with the discussion.

3/  Whilst all Voices attending have a personal experience of cancer (diagnosed or as a carer) it should be encouraged to, if required, use snippets of their experience if pertinent to the workshop. 

4/  Should some of the workshops be for newbies and some for ‘old stalwarts’? 

5/  Should there be a workshop on ‘how to complain’ so that many of the ‘negative’ experiences that participants feel they need to share can be addressed in this workshop in a constructive manner?

6/  So often during the conference people bring up negative experiences and complaints with the health system.  Could Macmillan also encourage people to report when things have gone well and encourage best practice by highlighting that someone has excelled at their job!  We all like to be appreciated and there are a great many people doing a fantastic job in the NHS and cancerland – we must learn to say thank you!