Health Supplement NCA Team

HEALTH

JUNE 28 - JULY 4, 2012 THE VOICE | 25

Health S U P P L E M E N T

ISSUE

P R E S E N T E D B Y N AT I O N A L C A N C E R A C T I O N T E A M

What you think about NHS cancer services

Hearing the words ‘you have cancer’ can be life changing. For a number of people navigating cancer services can be just as hard. Trying to ensure that NHS cancer services meet the needs of all people affected by cancer is an extremely challenging prospect, but a challenge that the NHS must meet. To help us identify what things are working and what areas need improving, National Cancer Patient Experience Surveys are carried out by the Department of Health (at the time of going to press two national surveys had been completed).

Welcome Welcome to the fourth edition of our health supplement, written specifically for the black community. This issue focuses on the big ‘C’ and includes some amazing journeys and personal testimonies. Within the pages we share with you the results of the national cancer patient experience survey and tell you what people from black and minority ethnic groups really think of NHS cancer services. We also provide information on some of the services that have been specially developed to support black people affected by cancer, and bring you the latest information on what the NHS are doing to improve cancer services for the black community across England.

Black and living with cancer

The survey carried out in 2010 was completed by a total of 67, 713 cancer patients, 879 of those patients described themselves as black or black British. All together 2361 cancer patients out of the total who completed the survey were from black or other minority ethnic (BME) groups.

There were of total 67 questions on the survey which asked about all aspects of a cancer patients care whilst in hospital. The analysed results found that people from BME groups reported a worse cancer patient experience than white cancer patients, with significant differences in 22 out of the 67 questions.

In particular people from black and other minority ethnic groups:

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Did not receive understandable answers to questions, and were less likely to receive written information on tests and procedures Had lower levels of confidence in the care they received and were less satisfied with the communication about their care Were less likely to feel they were given enough care and help from health and social services, once leaving hospital Were less likely to feel they were given enough emotional support when using outpatient services Black patients in particular were less likely to feel involved in decisions about their treatment

Navigating your way through treatment, and dealing with the issues associated with cancer is difficult enough, so it’s important that all patients feel that NHS cancer services meet their needs. The survey results tell us clearly that we still have some challenges to overcome before that is the case. However, NHS cancer services across England are working to make improvements to their services so that more patients feel they have had a service which meets their needs, and offers them appropriate levels of care, treatment, support and advice when they need it the most.

by Paula Lloyd Knight

4

Working to improve cancer services In response to the poorer patient experience reported by black and minority ethnic (BME) cancer patients, the National Cancer Action Team (NCAT), which is a national NHS team, developed the BME Cancer Patient Programme.

This programme was been developed to:

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Create a national BME cancer voice Help raise the levels of cancer awareness in BME communities Support hospitals to make their services more responsive to diverse communities

The National BME Cancer Voice has been developed for anyone who is of BME origin who has been affected by cancer, or their carers. BME Cancer Voice is there to help drive improvements in cancer services. If you are interested in joining or want to find out more, contact us on free phone 0800 634 7382.

The ‘Cancer does not discriminate’ campaign was launched by David Lammy, MP for Tottenham, in December 2011. The campaign is targeted towards people from BME communities and aims to:

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Promote a better understanding of the early signs and symptoms of cancer Increase the awareness of the national cancer screening programmes Dispel many of the myths and misconceptions around cancer

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Provide positive examples of people of BME origin surviving cancer.

The campaign provides information tailored to individual communities.

We hope that you find the information useful, and you share it with your family and friends. We are always keen to hear what you think about the publication so please do email us your thoughts at: patient.experience@london.nhs.uk Paula Lloyd Knight Associate Director Patient Experience, National Cancer Action Team

There are a number of ways you can get involved:

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Become a champion of change (Nottingham). Local people are working to improve local cancer services. Contact www.brightideasnottingham.co.uk for more information.

Train to become a local patient champion through our faith and cancer programme.

For more information contact dennise.friday@ncat.nhs.uk Listen to our health programmes (Ghanaian radio show) on www.spectrumradio.net/ncat You will hear our community ambassador interview healthcare professionals and patients, and bring you up to date information about cancer and how it affects the Ghanaian community.

Attend a cancer awareness workshop through our cancer and faith programme, visit www.bmecancervoice.co.uk for details of workshops near you.

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Be interviewed for our website, share your experiences and support both newly diagnosed cancer patients and health care professionals. For more information contact dennise.friday@ncat.nhs.uk

We are working to support NHS hospitals to improve their services by feeding back your experiences and working with the National BME Cancer Voice to ensure all voices are heard.

We are committed to working with local organisations to support change and improvements in NHS cancer services, so that when someone is told they have cancer, they can concentrate on beating it!

To find out more about all the initiatives under the national BME cancer programme visit www.bmecancervoice.co.uk

by Paula Lloyd Knight

26 | THE VOICE JUNE 28 - JULY 4, 2012

HEALTH

EXPERIENCE

My story

by Samantha Falode In my experience of cancer, and as a black woman, I feel our cultural and individual needs are still not being addressed.

Everybody faces an extreme fight against this deadly disease yet I believe that BME patients face an increased struggle.

My youngest daughter was six months old when I felt a lump in my right breast. I was diagnosed with cancer and underwent chemotherapy, surgery and radiotherapy.

Here are some of the issues I encountered that I think many other BME patients face.

As with many people, chemotherapy led to my hair falling out. This started three weeks after my first treatment. I tried so hard to retain my hair; positive thinking, chemo cold cap and good old fashioned prayer, but no joy. Eventually I took control and shaved my remaining hair off. As a BME patient I found that the wigs supplied by the NHS bore no resemblance to afro hair and patients have little or no choices. All individuals want is to have an appropriate wig that enables them to get on with their daily lives.

I also found that there was little reference to BME dietary needs during chemo. All the booklets referred to European foods that do not form part of my diet. I asked a nurse if I could still eat pepper and green bananas but she couldn’t tell me.

Radiotherapy had its problems too. At my planning meeting I was given four skin tattoos which would be used to line up the machine during my sessions. The tattoos used are a dark green/black colour and cannot be seen easily on black skin. So I was left wondering why they didn’t use a different colour!

Living in the shadow of Cancer Whoever you are, and wherever you come from, the impact of a cancer diagnosis is profound and has huge psychological ramifications.

The feelings following a cancer diagnosis can be powerful and overwhelming. Often people describe not being able to take any information in once the doctor says it is Cancer. There is often a sense of deep shock and numbness and for some a sense of unreality.

Once the news has sunk in, a person has to face daily life with an increased sense of uncertainty.

The secure and safe world that they once felt they had control over and belonged to, is shattered.

Like a ripple effect, the diagnosis touches all areas of a person’s life: work, relationships, children, friendships and planning for the future.

The devastation that a person may feel is profound. Every day may be tainted by different anxieties. A once active person may worry that they have to rely on other people, and this can affect their self-esteem. The bread winner, whom the family rely on, may be unable to work, and not only lose their income but also their status which can have a big impact on self identity and feelings of self worth. A person who lives alone, may not know who to turn to for help, and therefore feel very depressed and isolated.

This sense of deep loss can lead to feelings of loneliness, isolation, anger and depression and can manifest themselves in many different behaviours. A person may become withdrawn, teary, sad, or resentful and doesn`t want to engage with life.

Some people may not know how to express what they`re going through, or feel that they

I also had skin care issues during radiotherapy as the nurses did not have a clue about black skin. It was a family member who recommended I use pure Aloe Vera to relieve the burns.

My cancer journey is one that has reshaped my life and I am eternally grateful to be in remission, but there are different challenges that BME patients face that the professionals need to listen to, understand and action. We don’t want a different service, just one that considers our specific needs.

Words and Photo by Samantha Falode

What is Connected?

Connected is a national communication skills programme for health care professionals.

The programme was originally developed to support cancer clinicians and is managed

by NCAT (the National Cancer Action Team).

Over the past 4 years the course has been extensively used in other clinical areas and has proved just as applicable and effective.

The Connected course is an advanced, learner centred course, which addresses the challenging communication issues health care professionals face day to day with patients and their families.

Living with Cancer

by Evelyn Dougan

don`t want to burden family and friends with it.

Others may avoid the subject altogether and behave as though nothing has changed. Friends may find it difficult to know what to say, and as a result may become avoidant.

It is clear to see why a person and their family going through such a profound and painful experience, needs psychological support in order to express their feelings as well as to learn coping skills. With small positive steps everyday life is more manageable.

By Anjula Mutanda TV Psychologist, Ambassador of NCAT’s ‘Cancer does not discriminate’ campaign

Have you or your family been affected by cancer?

Have your say!

Join BME Cancer Voice www.BMEcancervoice.co.uk or call 0800 634 7382

Follow @BMECancerVoice on Twitter

Why do health care professionals need communication skills training?

Improving communication is not only about giving patients what they want and value, it is also about optimising the use of scarce NHS resources. We know there are many varied consequences to poor communication.

Reviews of NHS services show considerable inequalities. Effective communication should be at the heart of reducing inequalities and ensuring all patients have their needs assessed, get understandable information and are involved in making decisions about their treatment.

For more information visit: www.connected.nhs.uk

I was first diagnosed with breast cancer in July 2009. I went through 18 months of treatment which included chemotherapy, radiotherapy and surgery.

Then in early 2011, I developed a persistent cough. It was later confirmed that the cancer had returned, this time in the liver and I have been living with cancer ever since.

My experience to date regarding support has been mixed. I have had, and continue to get, very good support from my medical team.

However, I do feel more support is needed at the initial diagnosis stage and in coping with the cancer on a day to day basis. This has been more pertinent the second time around, knowing I am now dealing with a life limiting illness.

On the day I found out my cancer had returned I just needed to speak to someone other than the medical team or my family but really had no idea who to contact. I eventually phoned Macmillan who gave me a number for their representative in my local hospital. I was told you did not have to make an appointment which was good but this meant I had to sit around and wait to be seen.

I did see someone eventually, she was helpful and recommended some literature and gave me a contact name regarding financial help. However, I did not feel that was adequate for my needs at that particular time. It would have helped if there was a dedicated phone line I could have used for my questions about cancer as and when they arose. With things such as, what I can and can’t do, and what my legal rights are with respect to employment.

I also think for many it would be helpful to be able to speak to someone who may be experiencing the same things as you. For whilst the medical team might know the possible side effects they haven’t been through it. I feel having a formal “cancer buddy system” for those interested in joining may help, particularly with minority group specific issues.

Words and Photo by Evelyn Dougan

HEALTH

JUNE 28 - JULY 4, 2012 THE VOICE | 31

SUPPORT

Betterdays Cancer Care Betterdays is committed to increasing local, national and international attention on the devastating impact of breast cancer on the AfricanCaribbean community so that they can work with the relevant bodies to develop solutions that will alleviate the impact of breast cancer on our community.

Betterdays Cancer Care is an African Caribbean breast cancer organisation inspired and driven by the voice of its users. Betterdays works collaboratively with organisations to help establish a national agenda focused on eliminating health inequalities, specifically impacting black women and their families.

Betterdays works to improve the health, wellbeing and social care of black women by providing culturally appropriate information and practical support.

Betterdays • Provide breast cancer patients with a general overview of the breast cancer experience from diagnosis to survivorship.

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Provide updates of breast cancer information to encourage survivors to take responsibility for their own health so that they can reclaim a sense of control in their lives.

Offer a range of culturally appropriate services such as Patient Navigation, home support, support groups, a wig and prosthesis service and peer counseling sessions.

Aim to provide a voice to young African Caribbean women diagnosed with breast cancer; especially those diagnosed with triple negative and ER/PR negative breast cancers.

They also have a dedicated Breast Health Awareness programme which raises awareness in the African Caribbean community of how breast cancer affects black women, risk factors, signs and symptoms and breast cancer screening.

This programme also encourages a healthy lifestyle in order to facilitate breast cancer prevention.

For further information visit

www.betterdays.uk.com

BME (Black Minority Ethnic) Cancer Communities BME Cancer Communities (BMECC) is a Nottingham based Social Enterprise specialising in the support, development and delivery of BME specific cancer services. BMECC works in partnership with Bright Ideas Nottingham, an organisation with engagement and involvement expertise. Rose Thompson, BMECC’s Director, founded BMECC as a result of a family history of cancer and after losing two close family members to breast cancer.

What do they do?

BME Cancer Communities aims to address cancer inequalities within black, minority ethnic and low income communities through the development and delivery of diverse relevant services, including;

• • • •

Raising BME specific cancer awareness in the community and amongst health professionals Supporting community organisations to raise cancer awareness Developing appropriate resources for the purpose of training and awareness raising Developing support services and resources for people from BME and low income communities who are affected by cancer

BME Cancer Communities has carried out a number of cancer awareness events, including • Too Quiet Too Long 1 and 2, the first major events outside of London to recognise Ethnic Minority Cancer Awareness Week (EMCAW) Photograph provided by BMECC

Photograph provided by BMECC

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Food Nutrition and Cancer Conference in partnership with the Greater Nottingham Cancer Forum, Bright Ideas Nottingham and Nottingham Chinese Welfare Association (NCAT funded project Community Champions of Change was launched during the conference).

The conference aimed to clarify confusing messages related to diet and cancer, by making accurate, up to date information accessible to all. Key note speakers included Paula Lloyd Knight (NCAT) and Racheal Clarke (World Cancer Research Fund). Local NHS dietitians, the charity Cancer Equality, cancer patients and other experts also spoke at the event.

As an organisation that supports BME and low income cancer patients and carers, BMECC is well placed to develop services that meet the needs of disadvantaged communities. The organisation is concerned about low levels of cancer awareness (health professionals included), late diagnosis and increasing reports of premature cancer related deaths. BMECC is service user led and is working to reduce cancer inequalities and build a long term supportive service.

BMECC is a member of NCAT’s BME Cancer Alliance and supports NCAT’s ‘Cancer does not discriminate’ campaign.

For further information visit

www.bmecancer.com Photograph provided by The Black Health Initiative

The Black Health Initiative (BHI), based in Leeds, supports those who are living through or have survived a cancer journey and also those who have supported or cared for cancer survivors within the Yorkshire Region. The support can be individual or within our groups where people meet and support each other.

BHI provides factual information on signs and symptoms encouraging those from the African and African Caribbean communities to be aware and present to their GPs as soon as possible. They organise and facilitate seminars / workshops and conferences highlighting various cancer support services; Look Good... Feel Good and Healthy living etc.

BHI co-produces reports/fact sheets with larger cancer organisations and local

authorities to ensure that they are culturally appropriate and encourages engagement with service users and local Community Cancer Champions to ensure services are intentionally inclusive and to have a direct impact. They encourage those who wish to be more active to become part of their Buddy Scheme to support those who would benefit from such support. BHI does not duplicate services but encourages an accessible pathway referral process for all.

Cancer Black Care

Their support groups are gender based and various specialists are invited to ‘BHI Clinics’ to give clear information targeted specifically to the groups answering concerns, queries and requests for further information.

Cancer Black Care (CBC) is a registered charity. It provides a comprehensive support service to all members of the community and carers who are affected by cancer.

The organisation has particular expertise in dealing with black and ethnic minority cancer sufferers. Their core services include advocacy, befriending, welfare rights, family support, counselling, information provision, financial support and signposting to relevant organisations. It runs a support group in Brent, which is where the charity has its headquarters, and also one in Lambeth.

Coffee mornings are another form of clients supporting each other. CBC is influential

For further information visit

For further information visit

www.blackhealthinitiative.org

www.cancerblackcare.org.uk

in several Department of Health advisory groups. It recently demonstrated with another organisation (Betterdays Cancer Care) that screening uptake could be significantly improved by use of patient navigators working in the community.

Dr Frank Chinegwundoh, Consultant Urological Surgeon & Chairman of the board of Trustees

Photograph provided by Cancer Black Care

Black Health Initiative

32 | THE VOICE JUNE 28 - JULY 4, 2012

HEALTH

SERVICES

Cancer & Faith Communities Programme

Champions of Change ‘Champions of Change: Cancer Services’ is a new Nottingham-based service, aiming to improve NHS cancer services in Nottingham City, particularly for black and minority ethnic (BME) patients. It is brought to you by Bright Ideas Nottingham and BME Cancer Communities. It has been commissioned by the National Cancer Action Team (NCAT), as part of its ‘Cancer does not discriminate’ campaign, which aims to raise awareness of the early signs and symptoms of cancer among people from BME communities.

A network of ‘Champions’, local people from visible and non-visible BME groups, are currently being recruited. Champions volunteer their time to provide their views and opinions on cancer services in Nottingham, as well

as feeding into a national network called ‘BME Cancer Voice’. There are two types of Champion; Network Champions - people from BME groups with recent experience of using cancer services or being a carer for someone using cancer services, and Community Troupe Champions - people interested in cancer and carer issues who want to support others to put forward their views and promote the service within their community.

If you’re interested in becoming a Champion of Change, register with the Champions of Change facilitator, Lisa Jackson; lisaj@brightideasnottingham.co.uk 07989 302 571 or visit cancerchampions.wordpress.com.

Cancer in the family?

Genetic Alliance UK is a national charity of over 150 patient organisations that supports all those affected by genetic disorders.

They have carried out a research study, in partnership with the University of Nottingham, funded through the Big Lottery Fund, looking at access to NHS genetics services among black and minority ethnic (BME) communities.

a small number of people who are affected by hereditary cancers. For example around 5-10% of breast cancers are of the hereditary type. However, opportunities for reducing cancer in families affected by familial cancers could be lost if BME communities do not appreciate the importance and role of family history.

People who are found to be at an increased risk for hereditary cancer, which may be referred to as ‘cancer that runs in the family’, are usually offered a specialist appointment with a NHS Genetic Counsellor and sometimes have a special blood test. They can then be monitored to reduce their cancer risk and they can inform their relatives if they need to be seen or monitored too. It is only

The researchers have been looking at why people from minority ethnic groups, with a significant family history of cancer, are less likely to access NHS genetics services than the wider population. They invited people from a black Caribbean, South Asian, or white Irish background to take part. These people either had breast, ovarian, bowel or prostate cancer, or they have family members with one of these cancers.

Can you help?

As part of our ‘Cancer does not discriminate’ campaign, we need volunteers to help us spread the word. Can you spare a few hours of your time to hand out these health supplements and other vital cancer awareness information at events near you? Or maybe you can help us by manning a stall in your local library for a few days, to help signpost people to the right information and organisations that can help with their concerns.

To register your interest or for more information about volunteering and events we need help with, email: patient.experience@london.nhs.uk

The National Cancer Action Team and RAFFA, are pleased to announce their ‘Cancer and Faith Communities Programme’, which is part of the national ‘Cancer does not discriminate’ campaign. The Cancer and Faith Communities Programme will work with churches and faith communities across England to raise awareness and improve understanding of cancer, and challenge some of the myths and misconceptions surrounding cancer. The programme will include awareness workshops, drop-in sessions, and the opportunity to train to become a local patient champion.

Specialists will be available to answer any questions. If you would like to register to attend a workshop please visit RAFFA’s website: www.raffa.org.uk/health-and-well-being or email admin@raffa.org.uk

The programme has been developed to work specifically with churches and faith communities, to help challenge some of the myths and barriers often held about cancer, and other long term conditions. The programme aims to:

Local patient champions: Anyone who is a member of a church or faith group can become a local champion after attending a short training course. Local patient champions will be able to tell people why early detection is important, inform them about the three national cancer screening programmes and signpost people to cancer charities and support services and much more.

• Help

increase the levels of awareness of cancer and help earlier detection of cancer • Increase knowledge and awareness of the national cancer screening programmes • Provide information and support to people living with cancer and • Provide information to men about prostate cancer, and healthier lifestyles Free one-off workshops will provide participants with a greater understanding of cancer incidence levels amongst different communities, and an insight into the different cancer screening programmes. These 90 minute workshops will also focus on the signs and symptoms for breast cancer, bowel cancer, prostate cancer, cervical cancer and myeloma.

35 patients from BME communities took part and discussed their experience of having these common cancers in the family. They also invited 23 healthcare professionals from genetics services to share their opinions.

What did the research show?

Although some of the issues below may be found for white patients, they appear increased for BME communities, for example, in relation to sharing information and family decision-making.

Language barriers and stigma, or the way people are perceived by their own community if they or their family have cancer, can cause difficulties. If people cannot find out what medical conditions their relatives abroad had then this may prevent people from continuing with an appointment for this specialist service.

During a genetics appointment patients are given information about their risk of developing a hereditary cancer and asked to make their

Free drop-in sessions can be requested by churches and faith groups. If you would like someone to deliver a cancer awareness dropin session in your organisation, please contact Dennise Friday at NCAT on 020 8282 6276 or email dennise.friday@ncat.nhs.uk to arrange a date and time.

If you are interested in becoming a local patient champion, please contact Paula Lloyd Knight on 020 8282 6330 or email paula.lloyd-knight@ncat.nhs.uk or contact Rudi Page on admin@raffa.org.uk or 07958 744660.

For further information about this initiative please visit www.BMEcancervoice.co.uk or www.raffa.org.uk/health-and-well-being

own decisions about the options available to them. Some patients from ethnic minority communities found this unhelpful and expected a health care professional to tell them what to do. Sometimes this may mean that they feel less able to get access to monitoring, or to see other specialists or have further assessment.

What happens next?

Genetic Alliance UK has been working with community support organisations to find people to take part in the research and also to spread the results as widely as possible.

A report is expected and will be available in the summer to make recommendations in order to help improve access to this specialist service.

For further information visit

www.geneticalliance.org.uk

Contributors & Production Credits

Editors Paula Lloyd Knight, Associate Director, Patient Experience, National Cancer Action Team

Claire Elshaw, cancer care

National Cancer Action Team

NCAT Production Co-ordinator Suzi Chung, National Cancer Action Team

Design D237