Patient Stories – Cancer Clinical Design Group

To ensure that patient, public and carer voices are at the centre of our work; we have agreed that at each meeting there will be an allocated slot for our patient representatives to tell either their story or one of their peers.

Cancer – Moving from Primary Care – Secondary Care

Summary

I have a history of cancer; breast cancer diagnosed in 2001 with cardiomyopathy related to chemotherapy and a malignant mole removed in 2009. All my treatment has been at St George’s Hospital, as at the time of my breast cancer diagnosis I lived in Tooting. I now live in Morden and my current GP has a Sutton postcode. In Feb 2014 I had been on a trip to Singapore and was experiencing some breathing difficulties, on my return to the UK made an appointment to see my GP. Initially my GP gave me forms for a blood test and chest x-ray to take to St. Helier, but as I was about leave decided to check my oxygen saturations, which were 92% and they wanted me to go to A&E. I asked to go St George’s Hospitals as I had all my previous treatment there but was asked to wait whilst my GP made a phone call. I was then told GP had spoken to A&E at St. Helier and they were expecting me. The GP was of the opinion that the fact St Helier did not have experience of my previous history did not matter.
However, It did matter, as a result of my admittance to St. Helier, a conclusive diagnosis before treatment could commence was delayed by 3 months.
Ongoing issues with primary to secondary care/ borough boundaries – test results, especially blood tests which my GP doesn’t have electronic access to. Whenever I see the GP they assume I am treated at Royal Marsden Hospital in Sutton.
Letters from secondary to primary care being sent by post rather than electronically, I’m never sure if they are read or simply filed. I would like to think that on receiving a copy of a discharge letter from the hospital after a stem cell transplant and a stay of 9 weeks a GP would think it appropriate to call the patient! Certainly any medication changes are not updated unless I speak to the GP myself.

What were the best or most positive aspects of your experience?

I consider myself fortunate to have got a GP appointment the same day I called and that I was sent to A&E.

What do you think we could do to improve your experience?

Putting the patient and all relevant information at the centre of decisions, not arbitrary boundaries. The difference in distance terms between SGH and St Helier from where I live is two miles, there is no reason given the circumstances that I should not have been referred to St George’s Hospital.

If there was one thing you would change what would it be?

In terms of the interaction between primary and secondary care, I would have an IT system that was truly integrated and not dependant on what individual GP practices think it is appropriate to invest in.

Reaching out to diverse cultures

Summary

I was diagnosed with cancer 7 years ago. I did not have a fear of cancer, as I didn’t even know what cancer was. I was under the impression that only white people can get cancer, not us, I have never seen or heard a black person come out and talk openly about cancer.

Since being diagnosed, I have learnt a lot and I am able to transfer my knowledge among the BME community. I am able to signpost and ask other cancer survivors to volunteer and share their stories. I am on a few advisory panels where I am able to voice my opinion and ideas as a BME patient.

As I am a patient rep in the UK I get invited to Nigeria as well as a key speaker on cancer. My next seminar is in March 2018 at a University Teaching hospital honoured to be amongst the top oncologist and can disseminate my knowledge.

I go to Nigeria a lot, especially in October. I go there and help with a cancer support group – there is only one in Nigeria out of 37 states. I’ve just come back from Nigeria and I am happy to hear another charity recently started a support group so there is now two.

I met a lady who recently had a double mastectomy, she shared ideas of how to do treatment better and had ideas of improving palliative care and hospice care. The organisation she belongs to, is working with Macmillan Cancer Support in the UK to help develop training programmes for doctors and nurses in cancer support and end of life care – which is good.

What were the best or most positive aspects of your experience?

I received the best treatment I could have expected. I had a white friend with me when I was diagnosed and she knew all the right questions to ask – but not everyone has this, so what do we do for those who still think cancer is a white issue?

I had had a hysterectomy previously so I knew about shrinking tumours but my goal was to receive the quickest treatment option as I was going on holiday. My treatment was broken down – mastectomy, chemotherapy etc.

However, I was bombarded with jargon – stages, grades – this is meant nothing to me, it wasn’t explained! Luckily, I had a breast cancer nurse who was able to go through what to expect and I joined a support group which helped me immensely.

What do you think we could do to improve your experience?

I had the best treatment in Hospital. It was the aftercare when leaving hospital which needs to improve. Nobody sat down and told me what to expect next. I had side effects after treatment including depression – which again is another taboo and something not spoken about. We do not talk about how we get help or where to go. I managed to treat my depression at the end but for others, they might not be able to receive the same support.

There is also a perception in the BAME communities that patients could be overdosed with chemotherapy drugs but people won’t speak out about this so many health professionals are not aware of their fears and this is why people will not come forward for treatment. We need to stop the fear and work on education!

If there was one thing you would change what would it be?

To improve treatment for other cultures we need education, messaging, awareness and cultural awareness.
We need to go out and speak to different communities, hard to reach and share information with them. In the BME community, cancer is a taboo, something that is not spoken about and people maybe under the myth that they won’t get cancer. I was lucky enough to share my story with Drs from Merton CCG and when I said cancer is a taboo subject, a Dr asked me what I meant!

Listen and engage with different cultures and communities. Understand why there is a fear. Take the fear out and then break everything down whilst dealing with the cultural issues.

Things are getting better and the words is spreading but we still need to improve on cultural sensitives and realise not everyone can be treated the same.

Good Communication

Summary

2012: referral to Croydon University Hospital Breast clinic: diagnosis and surgery.

2013: chemo and radiotherapy at Royal Marsden Sutton. I took part in a radiotherapy trial and will be monitored for ten years.

Currently: Croydon University Hospital patient, no relapse. Currently on endocrine therapy, I’m not a gene carrier but I am BRCA VUS and I live with secondary lymphedema.

 My Overall Experience: Generally good

Communication was clear, appropriate and made me feel informed.   I knew who was doing what and why/able to ask questions. Critical because I am an equal partner – It’s my body and my life.

BUT: Things that could’ve have been better:

  • I had some difficult experiences. I felt voiceless and disempowered. I was a ‘patient’ not me.
  • During a long inpatient stay – I was crying and anxious. Being told (albeit meant kindly) that being upset didn’t do me or anyone any good made me feel voiceless.
  • Where and when to break bad news – where at all possible choose the right place. In the middle of a ward is not it.
  • Patients aren’t invisible – it’s not appropriate to talk about me in front of me – acknowledge I’m there.

What were the best or most positive aspects of your experience?

Being made to feel I was present in the room – I was seen, heard and acknowledged. In turn I trusted the medical teams, felt more open and less inhibited in being able to take part in my care. Lots of examples to choose from but three:

Good examples:

Surgeon – prepared me for BC diagnosis/put prognosis, treatment & survival in context I could understand > helped me grasp onto what was happening and make decisions.

Breast care nurses – honest and straightforward > they treated me as a grown up and able to understand what my diagnosis meant. Pastoral care, during and after.

Radiotherapists – asked my permission to touch me > felt acknowledged as a person in an undignified and abnormal situation

What do you think we could do to improve your experience?

I know my body – if I tell you it’s doing peculiar things during chemo I’m right.

An accessible co-ordinated information pack of who/what/when/where – covering what happens during treatment/key workers/allied health care professionals and services after treatment. It needn’t be complicated.

It would have been helpful to understand red flags indicating a recurrence and even how to check my breast/scar.

If there was one thing you would change what would it be?

Patients, carers and medics training/talking to each other on communication – we can help each other.

I don’t know what I don’t know – please flag other services (oncology dietician, lymphedema services)