Meet your patient and carer representatives

I’ve been giving my time on a voluntary basis for my local trust for about seven years now and I’ve never really thought about why I continue to do it until recently.

I decided to have an in-depth look at what was I achieving and why. Was it for my own personal satisfaction or that I wanted to help other people as was my original intention some years previous?

The short answer is that it was most definitely to help other people!

I’m still doing the volunteering work in my local trust but I’m branching out into other aspects of the NHS. I’m a little more confident now and feel that, to volunteer, you are a part of something much bigger. Having said that one doesn’t expect to be able to re-invent the wheel nor does anyone expect you too, just to help in tweaking as is necessary. This may be through one’s personal experience or to approach something from outside the box.

I approach things through the eyes of a patient carer as well as an understanding of an actual patient. The NEL CA, PCVC covers a greater area of north London opposed to my initial volunteering just in my local trust. I now feel my contribution is helping a wider population. My time commitment so far is minimal, say a few hours a month. In the future, any additional time I spend will be up to me entirely. So far due to the coronavirus, I’ve only attended virtual meetings but when more normal times arrive, the meetings will be in person and far more enjoyable!

My future achievements, I feel would be that I’ve been able to have an input as seen through non biased eyes and my contribution was listened to and accepted in a positive manner and where possible, actioned.

If you feel you could do something similar, have a chat to us and we’ll certainly answer all your questions and hope you can find the time to contribute as I’ve found.

As I am retired, I can attend meetings as I wish. There are no expectations of me, just that if I commit to a specific day and time, I keep to it. But it was my choice in the first place.

You also get to meet very nice and interesting people, which is no bad thing, and friendships can develop too.

Dr Qadir Bakhsh, MBE, Ph.D. - Patient Representative

I have been involved with the NHS for over 20 years now. First as a Non-Executive Director on various NHS trusts for 17 years and now as a patient representative. Before joining the North East London Cancer Alliance Patient and Carer Voice in Cancer (PCVC), I was vice-chair of the Patient Experience & User Involvement Steering Group of the UCLH Cancer Collaborative and member of the Urology Pathway Board at UCLH.

PCVC is a relatively new group, established during the pandemic. New systems and structures are being established. So we hear from various leads on their role each month and share our personal experiences as patients and carers to constructively impact their working for the benefit of better outcomes.

We meet once a month via Microsoft Meet for one hour and 30 minutes, to consider the pre-determined agenda – including previous minutes, background papers and relevant information. I usually take 30-40 minutes or so to read the papers thoroughly. Usually, at every meeting, we have a speaker, suggested by the group.

The North East London Cancer Alliance is genuinely interested, like similar initiatives in NHS, to hear patients and carers voices in designing, developing and delivering the services that meet not just their treatment needs, but socio-psychological needs as well for a better outcome.

It serves as an excellent platform to share experiences with other fellow members of the Group. I wish to contribute to improving cancer care at every stage, including early diagnosis, treatment and aftercare and support.

I am a strong advocate of holistic needs assessment, and early diagnosis, particularly for individuals and families, living in the most deprived areas in our patch. So I keep highlighting the need for it whenever I get the opportunity. 

My years of experience has shown me that NHS, a unique service of its kind in the world, is very fluid and keeps changing systems, procedures and structures, including staffing and locations for improvement and efficiency.  
Therefore I strongly recommend to patients and carers to get involved to stay ahead of the game and get the most from the dedicated and committed staff and systems for mutual benefits. Sharing one adverse or positive experience can change a lot in policy, practice, perception and attitudes on both sides, so consider joining the network for involvement opportunities.

Eithne Cullen - Patient Representative, PCVC Co-Chair 

It’s important that patient and carers’ voices are heard by all those involved in diagnosing, treating and caring for patients. Cancer patients need support throughout their diagnosis, treatment and beyond treatment, too.

I realised, after my own treatment, that I had developed knowledge about a condition that I could share with others and put to good use. So, since my treatment ended, I’ve been involved as a volunteer with breast cancer charities. Becoming a member of a cancer board was a logical step and this is when I got involved with the North East London Cancer Alliance.

I feel that living in and having experience of medical care in north east London puts me in a good position to contribute to the service.

Being a patient representative means attending meetings to discuss a wide number of issues with health care professionals and clinicians. The commitment to attending meetings isn’t huge; I usually attend one two-hour meeting a month. I also join other meetings to suit my own use of time, for example I attend a task and finish group too.

For me, taking part in these meetings means I can put forward the patient perspective which will improve services for others and encourage clinicians to understand the patient perspective when planning and delivering treatment.
It’s also a way of giving something back to a health service that I think does a wonderful job for me and my family and friends.

Jane Aylott - Patient Representative

I want to make a difference to patient outcomes by raising awareness of patients with rare and uncommon cancers who are a very unrepresented group and often struggle to get diagnosed.

After being diagnosed with Stage 4 cancer I searched for information so that I could be as informed as possible, I strongly believe that being pro-active has helped my outcome and I recently arrived at the milestone of 5 years since diagnosis.

I realised that it is particularly hard for patients with less common cancers to find support and accurate information. They make up 47% of cancer diagnoses but 52% of annual deaths from cancer in the UK. I realised that if I could possibly help others in a small way by being a patient voice within the NHS and raise awareness of the disconnect between these two statistics then I really ought to make a little effort.

I am a member of the North East London Patient and Carer Voice in Cancer, whose aim is to improve patient experience in North East London. I started off by being a patient voice on the project for the Mile End Early Diagnosis Centre which has opened this year and is a fantastic new facility for surveillance of patients in north east London. To my mind this is such an important ‘one stop shop’ for patients to have endoscopy, CT and blood tests in the same place, thereby reducing hospital visits.

I am also a patient voice for North Central London where I receive my care. Being a patient voice can involve as much or as little as you want but it does involve continued commitment.  Meetings may be held monthly or six weekly. I don’t want to take on too much so that I cannot be an effective patient voice.

I have seen the Mile End Early Diagnosis Centre through from the start when the site was some rather unloved offices to a state of the art facility, which puts the patient first and includes personal pods and light airy facilities that make what can be a worrying time more acceptable.

There are over 200 cancer types so if, in some small way, I can help the patients with the rare and uncommon cancers by reminding the NHS staff ‘Please don’t forget…..the less common cancers’  and thereby contribute to helping patients have better outcomes that will be very satisfying.

Anyone thinking of joining the patient voice representatives would be able to take up the training offered, and it is like any role you can improve with time and guidance.

In meeting other patient and carer representatives, I have always been impressed with the breadth of their knowledge and ability to look at problems within the NHS from an alternative and very valuable point of view. Patient representatives all have the patient experience front and centre and want to improve the NHS for patients.

Natalie Bleau - Patient Representative

I am a voluntary Complimentary Therapist for the Neurological Group at St Joseph’s Hospice. My Volunteer Coordinator sent me an email in December 2020 for an opportunity to work voluntary as a Patient/Carer Representative for the North East London Cancer Alliance.

I was impressed by the type of work they do to support patients and carers. I feel privileged to be part of the team of helpers to be the voice of those who unable to speak out.

I have had a deep, emotional experience when my beloved Father was diagnosed with stage 4 metastatic colorectal cancer in 2014. I cared for him, I was his confidante and, most of all, his daughter who absolutely adored him. It is so soul-destroying to see someone you love with all your heart deteriorating in front of you. The regret I carry is the fact I did not speak out when he could no longer withstand the second chemotherapy trial and seemed to be abandoned by the Oncologists. He died six days after his birthday on 17  February 2017.

As a relatively new Patient/Carer Representative, I have so far spent my time on training, attending monthly meetings and spending at least a couple of hours a week researching the websites to see if there are any new developments.

I have a passion for helping to highlight the emotional and mental aspect of the strain the disease has on the patients, as well as on the carers’ wellbeing. I have received my Diploma in First Aid in Mental Health and Psychology which I chose to gain more text-book experience as well as my own personal experience. I would like to work within the psychosocial field, as this is my greatest passion. I also have a website to encourage people to be mindful of their mental health, The Scripture Of Balance.

My advice to anyone who has a passion for supporting and becoming a voice for cancer patients and carers would be “the greater we are united in numbers with one voice, the more we can achieve for cancer patients and carers”.

Noel Judge - Patient Representative, PCVC Chair

I joined Patient and Care Voice in Cancer (PCVC) as I was already involved with a number of cancer and NHS groups both locally and nationally. Also, I have had a lot of cancer treatment in the past and wanted to use my considerable lived experience as a patient to help improve and shape cancer services for patients in North East London.

As a cancer patient in the past, I have had five major cancer operations, radiotherapy, chemotherapy and targeted cancer drugs. In addition to the PCVC group, I am also currently involved with the following groups:

• NHS England National Cancer Programme – Patient & Public Voice Forum Group member.
• NEL CA Personalised Care & End of Life Delivery Group member.
• Mile End Early Diagnosis Centre Patient Advisory Panel member.
• Sir Francis Crick Research Institute London – Cancer Exhibition
• Advisory Panel member.
• BHRUHT Patient Partnership Council member.
• BHRUHT Cancer Patient and Public Advisory Group member.
• Havering Health Champion.

I bring my perspective and experience as a cancer patient to help shape the future of cancer services in North East London by providing a patient voice to ensure that the voice of patients and carers is heard and listened to by our cancer alliance. I attend monthly meetings, review patient leaflets and contribute to the development of cancer services. As Chair I also help to shape the agenda. I am also a Patient Representative on the Personalised Care & End of Life Group.

My time commitment is about ten hours a month, which I can manage by fitting around all my other commitments. I am involved with a group of enthusiastic patients, carers, professionals and clinicians who are all committed to improving cancer services for patients which makes it all worthwhile.

My longer term goal is to see that I have made a contribution to help improve cancer services for local people in North East London.

If you are interested in joining our network, come along to observe a meeting and I am sure that you will find it worthwhile and will want to join the group for further meetings.