Patty Skolnik: In Her Own Words

In the weeks leading up to and during  the National Patient Safety Foundation Congress 2013 May 8-10, I'll be guest-blogging for the NPSF Congress website and cross-posting here. (this post should be on their site as early as tomorrow). I'm excited to be profiling patient safety champions and programs, using their own words to acquaint the broader community with their stories, efforts and successes. There are so many of you out there doing great work; I'd love to know all of you better, and I know the world would be as inspired by your work as I am! Once the Congress is over, I hope to continue with these profiles on this blog. Please share as you see fit to help connect the patient safety universe.

Who: Patty Skolnik

Executive Director, Citizens for Patient Safety, Denver, CO

Member, board of Governors, NPSF since May 2012

CitizensforPatientSafety.org

Patty@CitizensForPatientSafety.org

Twitter: @SkolnikPatty

Pat: What brought you to patient safety in the first place?

Patty: The death of our only child, Michael, in June 2004. Michael was 22 years old and was going to college when he passed out one day. A neurosurgeon looking at test results of Michael’s brain, said a cyst was blocking his cerebral fluid and causing his brain to swell to life-threatening levels. He told us Michael needed surgery within 48 hours.

I checked out the profile of the neurosurgeon on the website of the Colorado Board of Medical Examiners. Nothing unusual came up. What I didn’t have any clue about was that this neurosurgeon was being sued for the death of another patient in Atlanta and had operated on the wrong disc. He had also operated on and disabled another patient in Atlanta.

After my husband David and I had left the hospital for the night, the neurosurgeon got a signature from Michael—who was on heavy medication-- on a consent form to do brain surgery. When we got back to the hospital the next morning, Michael was already in the operating room. The procedure was supposed to take three hours. Michael was wheeled out six and a half hours later.

They didn’t find any cyst. But we soon saw that six hours rooting around in our son’s brain had caused tremendous damage. Michael lost the ability to walk, speak, eat, became partially blind. He was paralyzed except for spastic movement of his right arm and hand. Over months in the ICU he suffered from hallucinations, blood clots and many infections. It was absolute torture for him. Our son died of massive organ failure, 32 months after the surgery. We were devastated. But we had vowed to Michael, who’d been going to nursing school before this all began and had loved the field, that we would leave health care better off than we found it. So we started Citizens for Patient Safety, and I now teach and present to groups around the world. I’m trying to bring that mission to life every day.

Can you share an iconic moment of impact, success or motivation?

Patty: The realization that patients and families like ours had no meaningful access to important information about their doctors made us set out to change the law. We wanted physicians’ malpractice history to be available in a quick online search.

We had to bring some reluctant groups on board…the Colorado Medical Society, the state’s largest malpractice underwriter, and on both sides of the political aisle. But I met with them, said “I’m a mom, could you please watch a short video about our son” (it was a segment from the Today Show). Everyone eventually came on board. We had to do it, to create a resource every family might need one day.

The governor signed The Michael Skolnik Medical Transparency Act in 2007. David and I then lobbied for two subsequent patient safety bills that also passed. Another one is pending. Today I do advocacy training around the world.

Pat: What is the most encouraging thing that’s happened in the past year in patient safety?

Patty: For me, shared decision-making and informed consent are the foundation of patient safety. Patients need to be part of the team, the team that has to live with the outcome. I had been doing consumer training, and still do that. But in the past year the door to the provider world is opening up wider to patient advocates. More and more I’m working hand in hand with medical professionals, even participating in grand rounds in hospitals. In August of last year I presented to the board of the New York State Association of Hospital Trustees, nearly 500 decision-makers in health care. The key to having an impact is in how we as patient advocate leaders present ourselves. Not to “shame and blame” and point a finger, but rather by asking what the problems are, and how we can resolve them together.

Pat: What’s the most concerning thing about patient safety in the past year?

Patty: That people will lose hope. There is so much to do. But as Winston Churchill said, “Never, never, never give up”. We had that quote posted next to Michael’s bed. Progress in patient safety is coming slowly, but we have to keep going. The other thing I worry about is that we veterans who have been working in patient advocacy have a lot of wisdom and experience. We’ve learned how to “play in the sand box” with others. But we have to mentor younger people, to teach them all we’ve learned…to pass the torch to the next generation, so the improvement movement keeps going.

Pat: What unique skill will you bring to the NPSF 2013 Congress?

Patty: I’m a networker. I put the right people together. Sometimes they may seem like strange bedfellows, but there are common passions and complementary skills or capabilities. I’ve been able to do this several times. I think we all have to look for and assist others who can further our mission.

Pat: Where would you like to see more energy focused?

Patty: I’d like to see more patient and family representation at conferences that are talking about patient safety. Many advocates who would like to attend don’t have the employer support or financial resources to participate. So I’m hoping there will be ways to work on this. 

Parts of this profile are excerpted from my forthcoming book, Design To Survive: 9 Ways an IKEA Approach Can Fix Health Care & Save Lives.

NOTE: Patty Skolnik is also among a handful of patient safety advocates (including Helen Haskell, Rosemary Gibson and others) whose collaboration with Medstar Health is being featured in the forthcoming documentary film: Breaking the Wall of Silence. Film production funds were just successfully raised on Kickstarter.

Know a patient safety/engagement "Island of Excellence"  that deserves recognition? Please suggest in comments.

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Game, Set and Bloody Match!

Ok so I find myself in a position do I pick up the phone or do I wait.

I’m in a stale mate situation with Mr L holding the cards. I’ve received no confirmation letter or communication with my BC nurse reassuring me of the referral I requested to the Royal Marsden.

When I demanded to be transferred three weeks ago via my BC nurse I was told it would be discussed and a letter sent, but once I put the phone down I felt the tennis match between these two hospitals with me as the bloody ball wasn’t quite over. 

  

In a last ditch attempt I phone my BC nurse up, but hear a phone message saying she’s on annual leave until the 7^th. My next infusion of Herceptin is booked for the 12^th, so this set could be won by my team.

If I was a difficult patient in any shape or form I could understand being ignored, but my request is a sensible one. Place me under one roof with one team and the situation will be resolved. The fact certain words and actions have taken place in front of me has left me disillusioned about the standard of care I’m receiving. I’m the patient, I’m the one being prodded and poked and I will have my way.

Letter from Plastics:

Dear Dr S,

RE: Ms Sarah Mendoza –DOB: 29/07/1970 NHS Number: *** *** ****

      18 M*** **** ****, Northolt, Middx, UB5 5DR

I reviewed this delightful lady in Plastic Surgery clinic today who underwent left mastectomy and LD/implant reconstruction in November 2009 and capsulectomy in 2011. She had recurrent left breast cancer in July 2012 and underwent chemotherapy and radiotherapy which was completed approximately 2 weeks ago. On examination today her reconstructed left breast was soft upon palpation and there were no signs of capsular contracture.

We shall see her again in 3 months time for review or earlier should the need arise, and we will keep you informed of her progress.

Kind regards and best wishes

Yours sincerely

Mr D

See I am not a difficult patient…

Letter from Oncology

Dear Dr S,

RE: Ms Sarah Mendoza –DOB: 29/07/1970 NHS Number: *** *** ****

      18 M*** **** ****, Northolt, Middx, UB5 5DR

I reviewed Sarah in Dr L Breast oncology clinic today when she attended prior to cycle one of adjuvant Herceptin.

Her baseline ejection fraction on a transthoracic echocardiogram was 57% which is within our treatment tolerances. I have made her an appointment to be seen on the 18^thJune 2013 preceded by a transthoracic echocardiogram on week commencing 3^rdJune. All being well, she will continue on Herceptin on a three weekly basis in the interim.

Yours sincerely

Dr P

Being a tennis ball between two hospitals is not a brilliant position to be placed in. The issues you face with the odd grunt and grown is supposed to weaken your disposition, but I’m a Yorkshire women who wants her referral with zero excuses.

Oh and that letter I don’t understand the 57% bit, except that it is acceptable…. I hope!

My daughter playing the piano with her egg band.. I did this for a competition to win a brand new spanking £1000 camera from Jessops.. sadly we didn't win

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Who is Your Caregiving Hero?

When my brother was diagnosed three years ago with a rare Klatskin tumor (cancer of the bile duct), the prognosis was pretty bad. Maybe two years to live, the doctors told him and his stunned family. Just a week before, he'd been eating Christmas dinner with all of us, looking a little punky, maybe, but gobbling up shrimp cocktail and prime rib. How could it be?

Did I mention that was three years ago? Within months of surgery and intense treatment, my brother was back to work, and soon after, back to his pre-illness weight. He’s set to walk his gorgeous daughter down the aisle at her wedding this August. Regardless of what uncertainties the future may hold, there have already been more unexpected blessings than we could have hoped for.

But I remember back then looking up his diagnosis, and reading message boards from others experiencing this disease. The news was grim. Their stories were depressing. What I have learned since then, through my patient safety work, is that many of those who do really well—those who occupy the “upper outlier” curve on a scale of possible outcomes for someone with a bad disease-- go on with their lives. They tend to stop writing.

That’s why I’m taking a moment here to recognize the “miracles” of recovery, of lives saved when doubts were strongest, and to celebrate the people who stepped up and took on the responsibility and opportunity to be a caregiver. Each of you inspires others to have hope.

At his request, I’m happy to share here the story of Cameron Von St. James, a Minnesota man who stepped up when his young wife, the mother of their newborn baby girl, received a devastating cancer diagnosis. Congrats, Heather, for your strength and determination, and to you, Cameron, for finding a strength you never knew you had.

Who are your care giving heroes? Who made all the difference to your recovery?

Cameron's story:  

In the fall of 2005, at 36 years old, my wife Heather received a devastating diagnosis of malignant pleural mesothelioma, a rare and deadly cancer of the lining of the lung caused by exposure to asbestos. Years before, her dad had worked in construction and handled asbestos a lot, tracking it home to his family on his gloves, boots and coat. No one knew it was dangerous back then. It can take decades for the disease to develop.

But somehow, here we were. On the day we got this stunning news, Lily, our first and only child, was just three months old. We were supposed to be getting ready for her first Christmas. We’d been excitedly planning all the ways we could make it particularly special for our new little daughter. But instead of hanging lights and picking out a tree, we were confronted with selecting a team to entrust with Heather’s life. Without immediate intervention by a specialist, she was given 15 months to live.

After explaining mesothelioma, the doctor laid out our treatment choices. One was a local university hospital, an excellent regional facility that unfortunately had no mesothelioma program, or Dr. David Sugarbaker, a mesothelioma specialist in Boston. As I waited for my shocked and terrified wife to respond, I realized that she needed my help.  She was looking at me pleadingly, and I knew I needed to take charge for her. I looked up at the doctor and told him to get us to Boston.

Unprepared, ill-equipped and uncertain, I became a cancer caregiver that day, thrust into a long, difficult journey to beat Heather’s cancer.

The following two months were chaotic. Heather was unable to work as she began the full time job of fighting cancer. My days were consumed by taking care of my wife and daughter and managing medical appointments. Overwhelmed, I was only able to work part-time.

More than once I found myself crying on the kitchen floor, out of sight and earshot of those who needed me, wishing it would all just go away. I was careful not to let Heather see my terror—my fear of losing her to cancer, becoming a destitute single father, and raising a beautiful daughter who would never know her mother. The burden of bearing these fears in private—of being strong for Heather—was made no easier by knowing it was the only choice.

Family, friends and sometimes even strangers offered financial help and words of comfort. I can never thank all of them enough. If any cancer caregiver asks me for advice, I tell them to accept all offers of help. The burden is lighter when you don’t carry it alone. Take advantage of every resource, and don’t be too proud to ask for help.  There is no reason that you should face this challenge alone.  

Mesothelioma surgery, radiation, chemotherapy and the support of friends and family helped Heather beat the odds; she has now been cancer-free for six years. Although it took a while for life to return to normal, our battle with cancer taught me valuable lessons. I now fully understand how precious our time is.  

Taking care of someone with cancer is probably the toughest challenge you will face. You will have days filled with uncertainty and anxiety. You’ll get sad and angry. Know it’s ok to have bad days and fall short of your best. But today, I know how important it is to never, ever give up hope.

Two years into our ordeal, I was working full-time, taking care of Heather and Lily, and obtaining an education in information technology. My experience as a caregiver gave me the skills and the courage I needed to pursue my dream of returning to school. I eventually graduated with honors, and was given the privilege of speaking at the ceremony. In my graduation speech, I told the crowd how I would have never dreamed this could happen when first faced with Heather’s mesothelioma. My wife’s courage inspired me and taught me that if we keep hope alive, and trust our abilities, we can accomplish anything.
 

Heather, Lily & Cameron today

Thank you, Cameron, Heather and Lily, for a story that also coincides with national Mesothelioma Awareness Week, April 1-7.

And to that I would share a thought borrowed from Eleanor Roosevelt:

"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do."

 

Give a shout-out to caregivers everywhere! Give others inspiration!

 

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Never Under-estimate a Patient Survey

Q11. When you were first told that you had cancer, had you been told you could bring a family member or friend with you?

1.    Yes

2.    No

3.    It was not necessary

4.    I was told by phone or letter

5.    Don’t know/ can’t remember

When I received my results from my first lot of biopsies in September 2009 at Ealing hospital I had my five year old daughter with me. This was because it was the summer holidays and being new to London I knew no-one who could help. It would have been nice if someone had taken my young daughter to one side whilst it was explained, but no attempt was made. I was in tears and my young daughter was the one consoling me.

My diagnosis of recurrence in July 2012 by same BC nurse was done over the phone. It was an urgent phone call to get me back to Ealing hospital the following day.

Q14. When you were told you had cancer, were you given written information about the type of cancer you had?

1.    Yes, and it was easy to understand

2.    Yes, but it was difficult to understand

3.    No, I was not given written information about the type of cancer I had

4.    I did not need written information

5.    Don’t know/ can’t remember

At no point have I been given information on the type of cancer I have. The type of cancer was discussed verbally and then I was left to do the research on the internet to fill in the gaps. The mastectomy took place at Charring Cross hospital October 2009. I requested my results a year later and that is how I found out there was a question mark to the possibility of micro invasion. This I believe lead to my recurrence as my treatment in 2009 did not involve radiotherapy or any other treatment as mastectomy and recon was supposed to be sufficient.

Q16. Do you think your views were taken into account when the team of doctors and nurses caring for you were discussing which treatment you should have?

1.    Yes, definitely

2.    Yes, to some extent

3.    No, my views were not taken into account

4.    I didn’t know my treatment was being discussed by a team of doctors/nurses

5.    Not sure/ can’t remember

On consultation I mentioned my veins were not happy and would like a port fitted I was ignored. It is clearly written on my medical notes that my veins are hard to access. The consultant said I had juicy veins. I found his reply/attitude to my request very manipulative and condescending. It was more what he wanted rather than patient comfort.

On the first cycle of chemotherapy the vein used instantly reacted to FEC 75 and started to shut down. The nurse administering the FEC took three hours and said she would make a note and pass it on for a port request. If this side effect was rare I would understand, but it isn’t for FEC.

On returning to clinic 8 for my review before having my next cycle to be told to grit my teeth by a registrar for the next chemo was again inexcusable and inappropriate language to be used. On examining my arm you could clearly see an issue was developing. Apparently there was no mention in my notes of the nurse request. It was also mentioned by the registrar, he did not understand why a port was not fitted before treatment started because I would be receiving a year of Herceptin infusions.

After my second cycle and again the vein shutting down I was told by nursing staff in clinic 6 to ring my consultant if I hear nothing about a port being fitted. Ten days later as instructed I had to ring my consultants’ secretary leaving a message asking if they could chase the port up. Two days later I received a phone call to have my port fitted. I strongly question the fact that a patient should have to phone when it should be clearly communicated between staffs that a problem is there. Thanks to all of this I developed Thrombophlebitis of the right fore arm which should never occur. I understand that FEC damages the veins, but I’m a type 2 diabetic and my circulation is important. And not once has anyone taken the effect of this treatment and my diabetes into account. In fact it has been left to me to shout which is wrong.

On returning to clinic 8 for review for the third cycle of FEC I again had to wait one hour and thirty minutes. When I was eventually seen it was by a nurse not a registrar. Clinic 8, were unaware that I had developed a nasty case of Thrombophlebitis because I had received treatment at Northwick Park Hospital. I had tried to get help at Charing Cross via a phone call, but was told by the emergency Oncologist on call that I did not have an issue. Thankfully I saw sense and went to Northwick for a second opinion as the problem was getting worse. At clinic 8 without checking me over they said I did not need to see the registrar and everything was fine. I angrily protested in the clinic at my treatment thus far and went down to A&E. The excuse clinic 8 gave to A&E was I had missed a couple of my appointments. My reply was pull CCTV footage it will tell a different story, so no my opinion is not taken into account because all this mess was preventable from the very beginning.

Q21. Were you given the name of a clinical nurse specialist who would be in charge of your care?

1.    Yes

2.    No

3.    Don’t know/not sure

At no point in Charring Cross hospital have I received a clinical nurse. When enquiring about anything I have been told I must speak to my consultant or BC nurse at Ealing hospital, but they are not treating me Charring Cross is. When turning to my BC nurse at Ealing hospital I have been told to vent my concerns to Charring Cross hospital.

I have received zero emotional support or reassurance from any medical staffs at either hospital for eight months now.

Q27. Did hospital staff give you information about how to get financial help or any benefits you might be entitled to?

1.    Yes

2.    No, but I would have liked information

3.    It was not necessary

4.    Don’t know/ can’t remember

The Maggie Centre has been my means of support throughout my treatment. When I needed help to ease the impact travel had, they arranged a grant payment from Macmillan. At no point was I told by my BC nurse or any staff members at either hospital I could receive financial help. It fell down to another breast cancer patient and a Maggie representative to help.

Q28. Did hospital staff tell you that you could get free prescriptions?

1.    Yes

2.    No, but I would have like information

3.    It was not necessary

4.    Don’t know/can’t remember

Thankfully I already receive free prescriptions because I’m diabetic, but again I only found out recently when filling in the Macmillan grant form that I could receive help. Considering my journey with breast cancer started in 2009 again the information should be made clear to patients.

Q58. Did hospital staff do everything possible to control the side effects of chemotherapy?

1.    Yes, definitely

2.    Yes, to some extent

3.    No, they could have done more

4.    I have not had any side effects from chemotherapy

5.    I have not had chemotherapy

My reason is explained in Q16.

Q60. While you were being treated as an outpatient or day case, were you given enough emotional support from hospital staff?

1.    Yes, definitely

2.    Yes, to some extent

3.    No, I would have liked more support

4.    I did not need emotional support from staff

As a day patient Registrar’s do not know who should be responsible for my emotional care especially when being treated by two hospitals. As a patient I have been sent on a mouse chase for something that should be there without an issue. I understand this could fall down to finance rather than patient care. Hospitals work on a budget and the explanation given is I am an Ealing hospital patient.

Q62. The last time you had an appointment with a cancer doctor; did they have the right documents, such as medical notes, x-rays and test results?

1.    Yes

2.    No

3.    Don’t know/can’t remember

At my last appointment in clinic 8 I was left for one hour and thirty minutes until I approached the reception desk. It was explained I would be seen by the nurse shortly. After seeing the nurse and being in the clinic for now two hours I saw the registrar. He apologised for the long wait and explained they could not find my notes. I could not ask the registrar any questions about my care because he had never seen me before and had zero knowledge of my history.

Q66. Have you had treatment from any of the following for your cancer?

1.    Physiotherapist

2.    Occupational therapist (OT)

3.    Dietician

4.    Speech and language therapist

5.    Lymphoedema specialist

The above question is laughable to me because I requested a Physiotherapist for the Thrombophlebitis, and I was left to sort out the mess Charring Cross hospital created on my own. The fact that I was being treated as an outpatient because my main hospital was Ealing hospital left neither hospital wanting responsibility for my care. The excuses coming from my BC nurse to avoid aftercare in my eye were inexcusable because all I wanted was advice from someone who knew what to do nothing more. I was not given a leaflet or explanation the only people willing to advise me were at The Maggie Centre and they wanted me to see a Physiotherapist. 

Other Comments

Was there anything particularly good about your NHS cancer care?

No, not really I have found patient care and clarity at both hospitals to be terrible. The excuses by my team have left me feeling neglected. To me communication is so important, but when your notes go missing or the individual you are seeing has zero knowledge of your history at hand it falls on the management to why.

Was there anything that could have been improved?

As you have read there are a number of improvements that clearly need implementing.

Any other comments?

My treatment was done between two hospitals Ealing and Charring Cross. Treatment took place in 2009 and a recurrence developed in 2012 of same cancer. Thankfully with the help of the internet I have knowledge of how to manage the problems I have faced, but still it should not fall on a patient to resolve a medical issue, but qualified medical staffs. 

To be perfectly honest my whole experience past and present has left its mark. That is why I have requested a referral to the Royal Marsden hospital. The full extent of the issues I have faced and misuse of words when explaining avoidable issues by staffs has resulted in me requesting this referral. For a BC nurse to say I should complain to PAL because another patient who could not speak English had also received bad treatment, and they were using the language barrier as the reason to why mistakes were made leaves doubt. Not only that but for this BC nurse to say put it in a complaint to help this other patient because I was English and they had to listen to me is a sad and bad position to be placed in.

From the very beginning of my treatment and hearing the words, but we don’t have control over our nursing staffs my high alert button was switched on. You cannot treat a patient in this day and age and expect them to remain silent if they are unhappy, but so many still do. The health/rights of a patient should never be compromised, under-estimated or neglected.

........................................

So people fill out these forms and speak out if there is an issue. It may seem like a waste of pen ink, but staying quiet will not correct the issues within the NHS. I think we will be seeing more of these forms to help correct the mess the NHS is in. Five minutes of your time is worthwhile in trying to improve NHS patient care. I know I sure the hell have had my rant and I know I could of said more in the comments section, but I think the question section says it all.

My criticisms of my treatment are not dismantling the NHS dream, but make sure what has happened to me cannot be repeated. The Nightingales in the NHS need our support to get things back on track and make long over due improvements.

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Herceptin is a Pain in the Heart...

My first Herceptin infusion seemed to go without a hitch. Well at least that’s what I thought until five in the morning. I woke with slight chest pain, but hey-hoe just another glitch to be dealt with. In an attempt to divert my attention away from the dull pain on my left side I do some house cleaning followed by doing piano practice with Sophia. And did it shift it oh no.

By the afternoon I felt totally drained and left with the attention span of a goldfish. I had to submit to the fact that this issue was not just going to fade away. And not getting it checked out would be totally stupid. The registrar before signing the consent form had explained it causes issues, but it was one infusion. To find reassurance I turn to my FB page and ask a simple question.

Has anyone else had chest pain with Herceptin?

I had already headed for hospital and did not see theses replies until I returned home.

KPD: it is very common. I had lots of twitches in my chest and shooting pains. I had my heart scanned every few months. It is good to have them check it out.
SF: Yes I did too  always worth checking out x
JCT: Yes always have it checked hun, may be nothing but better than worrying xx
DLB: Yes… I had some heart function issues as well! Good luck Sarah!

In hope of resolving the pain I headed for the Big C hospital A & E. Several hours later in a last ditch attempt to solve the pain the oncologist Doctor on call gave me a Nitrolingual spray for under my tongue. Within five minutes the relief was instant. We still don’t understand what caused the pain, so further investigation has to be done by a cardiologist team. The explanation given by the registrar was my symptoms were not the norm for Herceptin, but I’m puzzled by this response because the four ladies that replied to my question say something totally different. It seems that these twinges or just a common side effect of this drug, but I still have to have the cardio check me out before the next Herceptin.

Thank you to those lovely ladies that left their messages of reassurance on my FB page it means I’m not alone and it was not just psychological.

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Break The Trust and You Break The Patient.

I was lucky to win two tickets for the UK Premiere of G.I.Joe. Walking the red carpet and a free night out before my next oncology appointment tomorrow is a welcomed diversion. Sophia was disappointed that she was not going, but the rules of the competition were over 18 only.

As I walked down the red carpet wearing a cream faux fur collar jacket I could not help but wave at the autograph dealers like I was the star. At first they did not recognise me, but my smart appearance did not fool them for long. My friend who I had brought along to experience the furore that I and Sophia have seen so many times thought it was madness. How could people wait hours in the freezing cold and rain? It baffled her because she is not fazed by the entertainment world. I said for some of those people it revolves around money, but for me and Sophia it’s a day out. Most the time we are away from these individuals and have friends that are collectors. My friend still could not understand the appeal, but it is our thing, and away from the cancer bubble.

We walked the sodden wet red carpet into the foyer of the cinema and my friend caught a glimpse of Dwayne 'The Rock' Johnson. I nudged her to get her camera out and snap a picture. Dwayne 'The Rock' Johnson was chatting with David Hayes the British heavyweight boxer. Sadly my friend took too long trying to set her camera up and security moved us on. I was a little faster and managed to get a couple of pictures in the foyer.

Our seats were at the front of the cinema. This meant when they did the intro I would get some excellent film footage on my camera to share with Sophia. And thankfully my friend would be able to take some pictures to show her son. The usual complementary bag of popcorn and bottle of water was waiting.

The following day I believed I would receive some sort of reassurance that my cancer had finally gone, but yet again I was left upset and disappointed. On arriving at clinic 8 the sister started to panic thinking I was there for a port flush. She instantly started to babble on about not having any port needles to do a flush. I said but I’m not here for a port flush that I had an appointment with Mr L.

I booked myself into the clinic and took a seat to wait for my name to be called. One hour and a half later still my name is not called. I go to the reception desk querying my wait. The receptionist went to investigate and returned saying the nurse will call you shortly. I take a seat again and wait a further thirty minutes to be weighed and sent back into the clinic. Another twenty minutes go by and finally I’m seen by a registrar. He is all apologises and explains my notes are missing. Then I’m told to sign a piece of paper for Herceptin to begin. He explains how they have been using Herceptin fifteen years and still have not got to grasp on the side effects. That it can damage your heart, but the heart seems to recover with time. And did I understand all of this?

Well yes of course I understood because thankfully I have other BC ladies at hand advising me. I signed the piece of paper and then explained I was having issues with the Tamoxifen. I was told I had to take it up with my GP and he would refer me onto a Gynaecologist. That there was nothing they could do there. I calmly said ok and left without even trying to get into any further conversation about my concerns. I wasn’t told if my cancer had gone because this man had never met me before. My notes were nowhere to be found, so it was pointless trying to ask. I was sent up to floor 5 to book an echo of the heart to be done in April. I thought to myself well that was bloody productive. As I walk up the four flights of stairs to level 5 I ring my husband up. I tell him in detail what has just happened and he said not again. He wanted to know when I start the Herceptin. I said ops! I forgot about that, so instead of going back to clinic 8 I go to level 6, chemotherapy and ask them. After all it will be them administering the drug every three weeks.

I return home with friend’s texting me, so has the cancer gone? My reply I don’t know because no-one seems interested in telling me anything.

Today I leave a message on the answer machine for my BC nurse to contact me. Two hours later she rang me back asking what the matter is. I said I want a referral to the R M. I want to be placed under one roof where my treatment can be monitored properly. I’m tired of the miss communication and errors.  She wanted me to explain even further and I did not see the point in doing so. We had already been down this road already and I did not want to keep repeating myself. I said look I have two very serious illnesses that impact on each other and no-one is taking into account my stress level. Every time something goes wrong at that hospital my heart sinks. And I should not be having that sinking feeling. I have been treated under several hospitals and bar one instance I have not had any issues with treatment or staffs. She said she understood and that my concerns were being noted. She said I should speak to Mr L and ask for the referral. I instantly said no and the reason I say no is I have only ever seen Mr L twice, once in July 2012 and the next January 2013 for radiotherapy to begin. Again I repeated to her if I don’t care about me then who will. I’m sorry but I want a referral for a legit reason and that is my sanity. I said only twenty minutes back I snapped at my husband because I’m at breaking point. Is that validation enough for you? Not to mention the fact my feet are dry cracked and if my diabetic nurse sees them she will hit the roof. I said Tamoxifen affects and creates Diabetes do you think I’ve not read the piece of information that comes with those pills before taking them. No-one is asking or monitoring me and to top it all are losing my medical information. She asked when the Herceptin starts. Friday was my reply. Oh! She replied. I said look I can wait until I’m transferred. The BC nurse instantly said no which I knew she would. No fool in their right mind would delay their treatment. I was advised to go have my first session and she would sort the referral out for me with Mr L herself.

Result!!!!

Well yes for me, but I should take some of the responsibility for things going pear shaped in the first place. If I had ignored what my GP said back in 2010 about referrals making thing awkward I would not be in this mess.

I cannot help but wonder about ladies that are in a similar position. What about those ladies with silent tears that no-one is picking up on? The NHS is a good system, but for that system to work without error or fault it must be transparent. Consultants, doctors and nurses must all be speaking the same language. Compassion and showing an interest is important to a patient’s recovery. If the staffs show they are not bothered then it creates issues of trust. Break the trust and you break the patient.

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