Health Update

Yesterday I had a follow-up appointment with the dermatology hospital specialist to see how the nuclear levels of drugs were working on my auto-immune disease, Lichen Planus.

I was a little sheepish when I went into the consulting room because I didn’t complete the whole drug regimen prescribed.  I know.  Do as I say, not as I do.  I began by explaining why I stopped.  At first he looked at me as if to ask if I didn’t believe he was the expert in the room, but then he smiled and told me he’d have done the same if experiencing the same side affects!

So what side affects was I experiencing (and that I haven’t told you about!), some of the worst were visual migraines which would come on quickly and mean that I couldn’t see properly, certainly couldn’t see any written word or computer and even when it came on when I was playing tennis, I’d mistake flashes of white migraine for the ball (most amusing to watch not to experience)!  I also had horrible pulsing pain in temples.  A lot of stomach cramps.  Nails crumbled if I touched anything.  Vomiting in the night.  Weird dream/nightmares that were totally vivid and technicolour.  Odd ‘away with the fairies’ feeling where I’m in the room but everyone around me is underwater.  And those are just a few of them as well as not a great head space and a lot of tears.

He was, given the above, pretty impressed that I’d managed to keep going with them for as long as I had.  We then moved on to examining the lesions.

Really pleased with the nuclear drug regimen.  For the most part I’m now left with ‘burn-out’ scarring on my wrists, torso, belly, thighs, armpits and feet.  Some of these areas have faded already but he told me that the scars sometimes don’t go for many many years and in some cases, never.  I’m not sure any of you will be seeing me in a swimsuit for a long time!  (**collective sigh of relief**)

The disease is still active in me though.  I have a new lesion on the palm of my hand and more on my feet again.  He’s recommended that I continue with the steroid creams on my hand and feet and monitor the situation.

The other area of concern was in my throat.  He examined my mouth and said he couldn’t see any lesions so the drugs had worked there too.  However the ‘piece of bread’ that I can feel stuck in my throat may not indeed be a lesion at all.  He believes it’s too far down my throat to be LP as it usually doesn’t go farther than the back of the mouth.  He thought that this may be damage from the drugs or a tear in my throat that perhaps has been exacerbated by the vomiting whilst taking the drugs.  He said he wasn’t too concerned but that I should keep an eye on it.  It may well heal itself in time and now that I’m not taking the drugs nor having the side affects it may heal faster.  My call.  If I’m worried about it and it continues to remain then he said I should go back to the GP and ask to be referred to an Ear, Nose & Throat specialist.  I’m happy to wait and am sure he’s right.  It’ll heal in time.

So where now?

He was super pleased with the progress.  He was very impressed with my NHS GPs who’d prescribed early the nuclear level of drugs and said that he’d never seen an improvement of this level given the severity and extent that the Lichen Planus has spread.  He said usually he’d expect to be seeing me for many more months/years before seeing this sort of improvement.

I know from the Lichen Planus Support Group that I’ve joined on Facebook, and which has been a huge support in understanding this disease, that my recovery is incredible.  There are people in the group who literally have been fighting this for 10+ years with no remission.  Others for whom recurrences are regular.  So maybe my own immune system isn’t as knackered as it would appear.  Maybe I’ve been able to clear some of it up without the drugs.  I’ve been juicing lots of good immunity fruit and veg and even found an company (Botanic Labs) where I purchased 3 days of immunity shots.  I don’t know if this all made a difference but I certainly felt better for them all.  I just wish I’d be able to afford to continue with 3 days of shots every couple of weeks.

I know I’m not out of the woods yet.  I am however much better than I was.  I have a bathroom full of nuclear drugs.  I have access to a supportive specialist and a wonderful GP practice.

We did however decide that I should be discharged from the hospital.  If I have another attack, I must start the drug regimen again.  I have the drugs already.  He’s also given me an open appointment at the hospital so that if I have another attack or I feel I need to see him, I can.

So for now, I’ll be applying steroid cream to my hand and feet.. the best way I know to make it work at super strength is to wrap in clingfilm and allow to fully soak in.  So this is me today.

IMG_8700 IMG_8701

Itching to tell you about it…

and also need an ickle rant.  Re my autoimmune stupid f’ing thing..

Firstly it’s got worse.  I only had external rashes (OK really unbearably itchy and all over my body but…)  when I saw the specialist in January after a 2.5month wait for an appointment.  The external spots have improved but joy I now have internally.  At my January appt my specialist informed me she was relieved there was no evidence internally.  The external rash can be managed by steroid creams but internally the treatment plan of oral steroids has pretty horrid side affects and was to be avoided at all costs.

I also had blood tests in January.

Whilst with my specialist she confirmed my appt for 4pm on Tuesday 24th February.  Approximately 3 weeks ago, I noticed signs that it may have spread internally but figured if it didn’t get any worse I could hang on for the appointment already in the diary.  However a couple of weeks ago the pain and ‘affects’ of the internal disease got too much.  I visited the specialist office in the hope of seeing her briefly to be able to get my suspicions confirmed and diagnosed, manage it or at least book an urgent appt.  I was sent away by the receptionists as I wasn’t a patient there!

Next stop my GP.  I had to make an appointment… and wait for the appointment… but relatively quickly got one on 6 February and she put in an urgent referral to be seen by the specialist with the new symptoms.

16 February I chased this up.. the pain now getting unbearable at times and also having a permanent ‘scratch’ in my throat whatever I eat.  Call me old-fashioned but I’d like to get that all sorted!

Apparently my ‘referral’ wasn’t urgent.  But I got the secret code and phoned the specialist to make an appointment.  The first one being at the end of March.  I said there was little point and disappointed as I was, at least I was seeing her next week.  They then told me that there was no appointment for me next week either!

The specialist office receptionist called me back later having checked with the specialist who said she didn’t need to see me again.  Hmmm so I guess that’ll be no follow up, or blood test results then?

I called my GP to get an urgent appointment there.  I was told there aren’t any appointment for a week or so.

I called the specialist surgery back again, in tears by this time, to be told there was absolutely no way they could get me an appointment and that I should go to A&E!   (And they wonder why A&E is busy!!!!)

I called my GP back again… they manage to find me the last appointment of surgery times yesterday evening.  She was horrified.  She inspects my mouth and throat and also does an internal examination and confirms there are lesions in both areas.  She looks at her notes and sees a letter from the specialist to me following my January appointment that says she’s got an appointment with me in a month’s time to follow up.  I neither received that letter nor (I now know) have that follow up appointment.   She faxed this, with a covering note saying it is urgent, to the specialist surgery last night whilst I was there, asking that they ‘fit me in for an urgent appointment’.

This afternoon I call the specialist surgery to discover the fax is still on their fax machine, that nothing has been done, that they have no appointments until the end of March and, after quite some time on the phone, they would now discuss it with the Dr tomorrow to see if she can make time for me soon.  No urgency.  No apology.  And no reference to the letter from the specialist confirming that she had an appointment in the diary to see me!

Allegedly I’ll hear from them tomorrow.

Apart from being in pain and really not loving the side effects of the spread of this disease, I’m so very disappointed with this specialist surgery’s approach to healthcare.  It’s no wonder that people are unhappy with their NHS when things like this happen.  I’m fortunate in that the NHS have been excellent to date… but it’s individual cases like this that leave a bad taste, get reported in the press and then make people care less about keeping our very valuable free National Health Service available to all.

I know that what I’ve read on the British Association of Dermatologists website that if left untreated it can become erosive internally.  Call me old fashioned but I think this may be an extreme weight-loss program!!  And also once ‘erosive’ it may develop into cancer… been there already and not sure I really want to do that one again particularly when it may be avoided if managed by drugs and care from a specialist early on!

Rant over… but thanks for listening!

And also… it was results day!

This afternoon I met with my new consultant at the Royal Marsden to receive the results of my 6 monthly scans.

ALL CLEAR!  Bring it on… another 6 months under my belt.

I had a lovely chat with my new consultant.  What a wonderful Dr.  We were able to discuss a whole host of things that have been raised via the Phyllodes Support Group.  He’s assisting with putting some ‘advice sheets’ together for the Group and also investigating some links to other research I flagged today.  Interesting also as he has been working in the US for many years and understands the differences between the US and UK for Phyllodes.  Very useful insights.

He shook my hand and congratulated me when I told him I managed to get Phyllodes mentioned on TV today!

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.

Risk Assessment: Breast Cancer, Prediction and Screening

Progress Educational Trust are hosting a series of events relating specifically to breast cancer. The variety of the talks cover genetics, gene testing, prediction, screening and risk.

Tonight’s free talk is being hosted at UCLH in North London and supported by Wellcome Trust. I was told about this event by a couple of people, one of whom had heard of it from the US and suggested I attend.

I was particularly pleased with the variety of speakers for tonight’s event. A spectrum of experiences and also of opinion.

Event Title: Risk Assessment: Breast Cancer, Prediction and Screening

Introductions from the organisers (Sarah Norcross – Director of Progress Educational Trust) and the Chair (Dr Ann Robinson – North London GP and Health columnist for the Guardian)
Wendy Watson (Founder and Director of the National Hereditary Breast Cancer Helpline)
Paul Serhal (Founder and medical Director of the Centre for Reproductive and Genetic Health)
Professor Stephen Duffy (Professor of Cancer Screening at Queen Mary University of London’s Centre for Cancer Prevention, and Director of the Policy Research Unit in Cancer Awareness, Screening and Early Diagnosis)
Professor Klim McPherson (Professor of Public Health Epidemiology at the University of Oxford’s Nuffield Department of Obstetrics and Gynaecology)

Each speaker only spoke for 10 minutes and this was then followed by an extensive question and answer session.

Wendy Watson spoke about her own journey. She was one of the first women in the UK to undergo a risk-reducing double mastectomy. Her own research led her to make and insist up on this surgical decision. She then sought to set up an advice line and raise awareness for others facing a similar decision. She has published her book “I’m still standing: My Fight Against Hereditary Breast Cancer”.

Wendy told us that 1 in 200 have genetic damage which may imply a higher risk of breast cancer. Wendy believes that more should be done and available on the NHS for women AND men to discover more about their genes and if any mutations have occurred. If you are concerned about a hereditary risk of breast cancer, her organisation, National Hereditary Breast Cancer Helpline offer support, advice and in some instances, funding for screening.

Our next speaker Paul Serhal. Paul spoke passionately about his field. He was responsible for the UK’s first baby born following pre-implantation genetic diagnosis for BRCA1 mutations.

Pre-implantation genetic diagnosis (PGD) is a technique that enables people with a specific inherited condition in their family to avoid passing it on to their children. It involves checking the genes of embryos created through IVF for this genetic condition. More information can be found at Human Fertilisation Embryology Authority.

Paul was passionate about the importance of his work and what it means to the people he assists.  I was so pleased to hear also that they currently have no waiting time, have some funding arranged for suitable patients and can offer 3 cycles to each couple.  I know of people who have the BRCA mutation and have considered NOT having children because of it. This work would assist many.

The third speaker was Professor Stephen Duffy. Prof Duffy was part of the original team who adapted the Swedish two-country trial of breast cancer screening on which the UK’s national breast screening programme was based. He remains an advocate of our screening programme and is often quoted at times when people say that the screening has led to over diagnosis of breast cancer in the UK. One such quote “In particular, it is good news that lives saved by screening outweigh over-diagnosed cases by a factor of two to one“.

He spoke about the difficulties of screening for women with dense breast tissue. This is often raised when discussing reducing the screening age as younger women tend to have denser breast tissue. Prof Duffy said that often there is less lead time to diagnose breast cancer due to the difficulties reading mammogram results of dense breast tissue.

I was delighted to see that he has also just been appointed as Senior Investigator by the National Institute for Health Research

Our final speaker was Klim McPherson. Klim focusses his research on epidemiological methods and women’s health. He spoke about the factors that contribute to breast cancer. To give you some idea, I found this quote from the BMJ “Klim McPherson is the man least likely to accept an invitation to lunch at McDonald’s

His research has led him to look at and compare the US to the UK. He identified that the US certainly were far more radical with their surgery and treatments – however it wasn’t clear how much of this may be due to ‘insurance’ factors but felt not always necessary.

He was pleased to note that although breast cancer may be on the rise for being identified and diagnosed it was now much rarer to die FROM breast cancer.

So how can we avoid getting it?

  • We are getting periods at a younger age and having children at an older age.
  • He found that if you had your first period at the age of 11, you were 3 times more likely to get breast cancer than a girl who started their period of age 14.
  • There is a higher risk of breast cancer in women who have taken the pill or HRT.
  • 5 years of HRT doubles the risk of breast cancer.
  • Obesity post-menopausal makes you at much higher risk of breast cancer.

There’s a 20% reduction in breast cancer when in the breast screening programme i.e. every three years. It is imperative that people attend their screening when invited.


There was then a long period for questions from the audience to the panel. As this was a free to attend event open to all, I was pleased to see a good variety of attendees and hence with the questions raised, I’ve stated who the questioner was.

Q1 Scientist – What’s the extent of genetics, epidemiology & screening connection?
KM – Yes they are connected. There is an Integrated Pathway (which is new) that is assisting with the integration of these three areas in determining healthcare.
Q2 Dr – If money was NOT a factor, what would a perfect screening programme look like for breast cancer?
SD – About right with the current screening programme i.e. 3 yearly mammograms. There is often talk of MRIs being better however patients don’t like MRIs and although they may be marginally more effective experience tells them that they produce more false positives so may lead to unnecessary surgery or treatment. Angular mammograms where using architectural distortion produces measurements of angular distribution i.e. slices of the breast may be more accurate but are complicated to read and produce.
Q3 Patient advocate – Spoke about the importance of trials, clinical and surgical. Asked what could be done to ensure more patient involvement and also of the recent DCIS trial.
Q4 Patient – What is offered to ladies under the age of 30 who have been tested positive for BRCA mutations by way of screening? Mammograms are not offered nor the option of going onto the normal breast screening programme.
SD – He reiterated that most screening is ‘pointless’ for people under the age of 30 due to the denseness of breast tissue.
Q5 Journalist from Pink Ribbon Magazine – To Paul asking more about the PGD programme and requesting information.
Q6(1) Clinical Geneticist – If we delayed puberty then this might/would reduce cancer… why can’t we?
There was much discussion about the ethics around this and although there was a consensus that it may reduce cancer, would it be ethical to do so?
Q6(2) – If each child was tested for BRCA at birth or perhaps a mutated bowel gene and found positive… could we delay their puberty knowing this may reduce their long term risk of cancer?
Again much the same discussion. Yes it may help but would it be ethical? What other implications may this have upon the person emotionally and psychologically?
Q7 Genetic counsellor – How many genetic counsellors are there in the UK and where are they? It was felt that many genetic scientists went on to become genetic counsellors and nurses in this field. However nobody was sure if there was a directory of genetic counsellors in the UK.
Q8 Patient – Why is breast cancer in younger women rising? What are the risk factors and how can people avoid them?
KM – He reiterated earlier periods and later pregnancy. He also discussed the increase in our use of plastic based products from an early life. Makeup, deodorant etc etc often contain oestrogen like products in the plastic and we’re putting this daily onto our skins from an early age.

There are two final events in the series. Sadly I’m unable to attend but please do go along ‘Risk Management: Breast Cancer, Business and Patents‘ on Thursday 5 June, and a concluding event on Thursday 3 July.

Thank you to the Wellcome Trust for supporting this series of events and UCLH for hosting these events by the Progress Educational Trust.

Consultant results appt

Visiting the Royal Marsden today.  Always love that they have a wing named the ‘Wallace Wing’.

I’m loitering in the waiting room and it slowly empties… I’m still sat there.  Eventually it was only myself and one other lady waiting to see a consultant.  Even the receptionists had gone home!

My appointment was second to last… I waved at the other lady as I went in and we laughed!

My consultant was lovely.  She said that there was nothing to worry about on either my chest x-ray nor the ultrasound results.  I’m signed off from scans for another 6 months, whoohoo.

She asked about my general health and I mentioned the headaches.  I told her that the neurologist had said it must be the menopause.  Haha she asked instantly how young the male consultant was!  Anyway after a brief conversation about them, about MRIs, symptoms and tests, she said I should head back to the GP to investigate further.  She was adamant that it would be unusual at my age to be menopause related… but perhaps.  Sadly I was asked again when Mum started her menopause – usually the pattern follows mother -> daughter.  Sad because I don’t know and Sad because I can’t ask her.

Great news about the scans though.

Building Careers in Clinical Research Conference

This conference is held annually for nurses and health care professionals to understand about clinical research as part of their career path, network and share ideas and good practice.

Conference Agenda – Clinfield Conference

Clinical research nurses are historically an under recognised group within the healthcare setting.  However their work is invaluable to advancing medical research and patient understanding to available treatments.  The skills of clinical research nurses are so often under-utilised within mainstream clinical practice and the research agenda but offer so much.   One the main discussions at the conference therefore is to look at the broader agenda and look at where we can each promote the invaluable work that the clinical teams do.

My invitation to participate in the conference came to me because of my involvement as a patient advocate/representative with Imperial College Hospital.

Throughout the day’s conference there was an overwhelming enthusiasm for spreading the word about clinical research.  For better understanding about what clinical research actually is and what is available at the bedside together with what is being developed in the lab.

Certainly I have been aware that there isn’t enough information nor knowledge available to patients nor also a practical matter of fact guidance to what clinical research truly is.  As patients we there is a need (in most of us) to know that research is being undertaken to advance medical care.  To know that there are changes that may benefit us or those who travel the road behind us.  To know that involvement in a trial will not leave us like the Northwick Park ‘Elephant Man’ drug trial.  To know that participation in research may mean simply completing a survey of questions every few months or having your bloods analysed regularly.  It’s not always about a taking a new drug!

What I discovered from this conference was that it wasn’t only the patients who didn’t fully understand clinical research – it’s also the doctors and nurses in clinical settings.  I guess it’s understandable that a GP might not be able to keep up with all the ‘new’ research.  Less understandable for doctors and nurses in a hospital environment but still possible.

This is why it’s critical that ‘clinical research’ is something that is taught in medical school as progress.  That there is an easily accessible, searchable and functional database of trials available to all.  That the trials in the database are up to date and have contact details of who’s in charge and how to participate.

It’s also critical that there are trained clinical research staff available for consultation with patients and colleagues alike.  These staff members to have a voice at MDT settings so that all staff are aware of their role and expertise.  They should also span the gaps between primary and secondary health care settings.  Referrals of patients are sent to them to have research explained fully to them and how they may participate.  They should also, with training, be able to dispel any myths about elephant man etc and to encourage the positive impact of clinical research.

In addition the role of a clinical nurse specialist doesn’t have to be a full-time role.  There were  a number of speakers who told us of how they had embraced their clinical role in addition to research.  As a midwife, as a nurse, as a lab clinician… perhaps this is one of the best solutions so that they’re able to bring both practical and research experience to each case.

An excellent conference and certainly there was a great deal discussed for me to consider in my many networks and patient advocate involvement roles.  Below are a few bullet points:

  • Historically clinical research has been under recognised in healthcare.
  • Clinical research skills are under-utilised in main stream clinical practice and research agenda.
  • Need to look at a broader agenda.
  • Need to promote the invaluable work that the clinical teams do.
  • More multi-professional education and training needs
  • Research, translation and innovation
  • Through research we bring some certainty in an uncertain NHS world
  • A larger impact on health is from ‘public health’ rather than ‘medical health’ – need to re-balance
  • Gaps between primary and secondary health care.  Closer integrated working practices are needed.  New ‘Pioneer Program’
  • Targets are not the same as outcomes
  • Patient Centred culture
  • RCP – Circle of Patient Centred Care
  • RCP – Future Hospital Commission 2013 diagram
  • Competencies and appraisals for research nurses should change and be updated in methodology
  • We don’t do enough to raise awareness of clinical trials
  • Need more clinical research training provided to clinicians so they’re able to speak with patients
  • More accurate information on hospital trust websites and other websites i.e. charities, local authorities etc
  • PALS should receive training too
  • Everyone should be aware of ‘We do clinical research
  • National Institute for Health Research Clinical Trials
  • Involvement in research benefits patients but also hospital trusts – financially and with reputation
  • Managers and senior colleagues should support staff in training and research recruitment practices
  • Work with the media and charities to send ‘good messages’ about research not just dramatic headlines
  • Other healthcare professionals including pharmacies should be involved and aware of clinical research.
  • Always feedback results (good and bad), send thank you’s to those involved and offer further involvement
  • What do clinical nurses do?
  • Read Kerry Stott’s blogs about clinical trials
  • We Nurses‘ website  and also twitter @wenurses

“To find your mission in life,” author Frederic Buechner is quoted as saying, “is to discover the intersection between your heart’s deep gladness and the world’s deep hunger.”

Research changed my life

“If we are serious about patient choice and patients having a partnership with clinicans, then we have to be serious about raising patient awareness of clinical research opportunities.”

Healthwatch – Cancer Project Group

It’s been quite a while since this project group met up.  There’s been such a lot of confusion as to what’s going on and whether Healthwatch (or LINk) will even exist in the new structure.

The Central West London group has created a number of smaller specialist groups and the cancer project group has been terrifically active and positive.  There are a number of projects that we can measurably show have improved the cancer services in the area, particularly the regard to the ethnic minority groups now attending screening appointments and seeing Drs when symptoms first appear.

Today’s meeting was called to explain, as it stands at the moment, about the transition from LINk to Healthwatch.  What it means?  How it will impact current projects?

Healthwatch is the new consumer champion for health and social care in England.  It provides a voice for the community to improve care, to complain, to acknowledge good care etc in your local area.  It should also be used as a place to signpost to other health and wellbeing charities and organisations in the area and for those organisations to work with Healthwatch.

We are all aware of national projects looking at hospital care or home care.  Perhaps you could get involved and make a difference locally by using your experience to make your voice heard DIRECT to the local area.  There are a lot of opportunities to get involved.  Attend meetings.  Be part of a project group inspecting hospitals, surgeries, clinics etc.  Feed back on your experiences.  Membership is free and you can choose how much time or experience you might want to dedicate.

There was also a presentation by User Involvement Lead for the new Cancer Commissioning Team to tell us all about the new Cancer Services in London.  There has been a lot of confusion about what is to happen.  How London is to be divided into regions to work within the new structure.  How we can improve cancer services for the many people diagnosed each year in London.

A few facts:

Around 13,600 people die from cancer in London each year.
More than 50% of whom are under 75 years of age. The number of new cancer cases in London is predicted to increase from around 27,000 in 2002 to 28.500 in 2022

Londoner has historically reported a poorer experience of cancer care than compared with other regions of England.  This needs to improve.  Not only for those being diagnosed but those living with and beyond a diagnosis.  We have so many cancer specialist hospitals in London but we need to ensure that they are working together for the benefit of all patients and carers.  We need to ensure that the service provided is of the best possible care but that it is equitable no matter which hospital you attend.  Collaborative working and less ‘competition’ between hospitals and trusts.  I personally feel that we, patient and carer advocates, need to continue to remind the people in charge that the service they offer should be the best and should be patient-centric!

London cancer services have been divided into two areas:

London Cancer Alliance – West and South London
London Cancer – North and East London

Although that sounds a clean division.  In fact it’s more of a crescent and geographically cover a vast area.  There have been huge concerns about the spread of hospitals and trusts and how they are going to communicate.  Just to host a short meeting will take many hours for some participants to attend.

It’s also very important that we, as patient and carer advocates, participate in the new structure.  There are opportunities to sit on committees and boards.  There are also user groups, pathway groups and many other opportunities.  Not all of them are regular commitments.  Not all of them require you to attend meetings.  Your experience as a patient or carer is critical to ensuring improvements can be made.  Often, and at a simple level, the wording in leaflets and information can be improved by patients reviewing it!

Below are a few links:

North West London Commissioning Support Unit – Patient focus.  We’re passionate about helping you improve services for patients and will work with you to deliver the change and benefits you’re striving for.
West London Clinical Commissioning Group
London Cancer Alliance – Improving Cancer Outcomes through partnership
London Cancer – London Cancer is a partnership of NHS, academic, charity and cancer specialists dedicated to providing  expert, compassionate care for every patient, every time.

We also discussed briefly the results of the 2013 National Cancer Patient Experience Survey.  Disappointingly London doesn’t fair too well.  There are even a few points where it appears some of our hospitals are doing OK… until you spot that in relation to other hospitals we all did badly!  Do have a look at it.  Perhaps your input and shared experience could help improve the services.

Macmillan have also commented on the survey here.



Tera Younger Memorial

During my time in Cancerland I’ve been blessed to meet and get to know a number of wonderful people.  One such person was a lady by the name of Tera Younger.  I had the honour to work with her on a couple of projects and also to be part of the same committees and boards.  Tera always amazed me at the amount of positions she held, the knowledge that she had obtained and also the tenacity to see a project through.  She was an incredibly positive person with a warm heart and a kind smile.

There was no doubt that some people referred to her as ‘Terror’ and wished she’d give up on projects affecting them.  But Tera didn’t.  If she believed in something she would research it, back it with facts and figures and do her very best to improve, alter or advance.

For me, Tera was also an incredibly positive person.  On more than one occasion she mentored me regarding projects.  She put me forward for more senior voluntary roles.  She asked my opinion and review.  More than that, she believed in me.  In my ability and my voice of experience from my own cancer ‘journey’ and also representing others.

Today a group of us gathered in the Chapel at the Chelsea & Westminster Hospital and celebrated the life of Tera.

photo-11It was clear from the stories being told, as part of the service as well as before and after it, that Tera will be truly missed.  Missed as a person for sure and also for the dedication made to her work.

Rest in peace Tera.  But also rest assured that your legacy will live on to improve, advance, alter AND importantly make all healthcare more patient-centric.

Dodgy knee

OK I’ve finally given in.  My knee has been blinking killing me since I had that fall in Melbourne.  I can’t kneel down or put any pressure on my knee.  You’d be surprised how many times you do need to kneel or balance on your knee and I’m only aware of it when there’s a shooting pain travelling at supersonic speed from my knee to my head – Ouch!  The other problem with my knee is walking up and down stairs.  Not too much of a problem at home as I live on the ground floor but again until every step is accompanied by  shooting pains I’ve been surprised at how many steps I actually take.  I’m learning to avoid certain tube stations where there is renovation works meaning diversions via lengthy spiral staircases!

Anyway this morning I attempted to do a Bootcamp Pilates class.  These are using a bench known as a Reformer.  Much of the class was fine until we reached some exercises that required kneeling.  Excrutiating pain through my knee and my obvious discomfort led the instructor to my bench.  After a brief discussion, he suggested it may be time to have it x-ray’d.

So that’s how I found myself waiting in line at the local hospital to see the Dr!  Some hours later and feeling a little like a fraud amongst people who were properly sick, I saw the Dr.  I apologised first for wasting his time with something so trivial.  He told me off for not visiting sooner since the fall and suggested I may have damaged it further with such a delay.  Once we’d had a chat and he’d had a poke around my knee however he suggested, with some concern on his face, I go for an x-ray.

A short while later I’m shown back into a cubical to await the results.  The Dr returns to announce that I had indeed wasted his time.  There was no visible damage and to go home!   Charming… I still can’t walk up or down stairs or kneel without extreme agony.  Thanks matey-peeps!