Breast Cancer Care: English breast cancer patients missing out on vital emotional support

The majority of breast cancer patients in England are routinely failing to receive essential psychological and emotional support despite government calls for, and NICE guidance on, the provision of such care, it is revealed today.

Christine Lovesey, 45, from Lincolnshire:

“I truly believe that you get a form of post traumatic stress after you are treated for breast cancer which is why psychological support is so vital. You finish the treatment and you’re sent off into the big wide world but you’re so depressed and scared and still reeling from all that has happened. You think that you should be happy because you’ve had all this treatment to get rid of the cancer but really you’re still terrified.”

Breast Cancer Care, the UK’s leading breast cancer support charity, surveyed more than 800 breast cancer patients in England diagnosed in the last three years on key aspects of their treatment and the levels of care and support they received.

While the vast majority (88 per cent) said they had a good experience of clinical treatment and hospital care, respondents consistently highlighted a lack of emotional and psychological support during and after treatment, resulting in feelings of anxiety, isolation and uncertainty over future health.

Breast Cancer Care’s findings showed that:

. During treatment, 40 per cent of respondents said they had ‘too little’ information on psychological and emotional support available to them, either within the NHS or via charities or support groups
. Once hospital-based treatment had finished, 57 per cent of respondents said they were concerned with support services
. Of these, 55 per cent of respondents said that information on psychological or emotional support was lacking

A cancer diagnosis can have a devastating impact on the quality of a person’s life, and the need for strong psychological support for cancer patients is widely understood.

Support could take the form of counselling, information on support groups and charities, referral to body image services or advice on managing side effects of treatment.

Separate research1 has shown that, around the time of diagnosis, approximately half of all cancer patients experience levels of anxiety and depression severe enough to affect their quality of life.

In the six months following diagnosis a quarter of these will continue to be affected, and over 12 months around ten per cent will experience symptoms severe enough to warrant specialist professional help1.

The government’s recent Cancer Reform Strategy acknowledged that psychological and emotional support can be as important for many patients as other aspects of their treatment.

And in 2004 the National Institute for Health and Clinical Evidence (NICE) issued guidance that all patients undergo systematic psychological assessment at key points, and have access to appropriate support, by 2009.

Despite this, respondents to Breast Cancer Care’s research repeatedly reported feeling ‘let down’, ‘cast adrift’ and ‘on their own’ at varying points of their treatment and after-care.

Christine Lovesey, age 45, from Lincolnshire was diagnosed in 2005. She has nothing but praise for her medical team, but when faced with concerns following treatment Christine was unsure who to turn to for help.

“When I rang the breast care nurse she would always answer or ring back but I felt I didn’t want to take up her valuable time by saying my back or leg was aching or that I was having hot flushes or other worrying side effects. They are very busy helping newly diagnosed patients and you don’t want to use their precious time up. However, I really needed to be able to speak to someone who could help put everything I’d been through into perspective for me.

“When you talk to your husband or mum it’s not the same because they want to look after you, which is fine, but you need someone outside of it all that you can speak to and discuss all the feelings you have. You are scared, angry, confused and worried about what the future holds.”

Commenting on the survey, Samia al Qadhi, Chief Executive of Breast Cancer Care, said that while it was reassuring to see so many patients reporting high levels of excellent clinical and medical care, the charity had grave concerns that patients were not receiving the emotional and psychological support they so clearly needed.

“Nearly 46,000 people are diagnosed with the disease every year and thousands of people are now living with cancer for long periods. As well as signposting patients to support organisations it is vital that psychological and emotional support becomes an integral part of every patients’ clinical treatment,” she said.

“NICE guidance states that all cancer patients should have access to appropriate psychological support, and we know that Cancer Networks are trying to implement these guidelines.

“Yet as today’s research shows, there is little evidence to show that effective psychological support exists – four years on from NICE issuing these guidelines and despite clear government recognition of the need for improvement.

“Without greater commitment and adequate resources, they will fail to meet the deadline of December 2009 to implement this guidance and patients will continue to feel let down.”

Breast Cancer Call is today calling for:

. A commitment by all Primary Care Trusts to ensuring the NICE Guidance is implemented by its deadline of December 20092
. Training in advanced communication skills and dealing with emotional distress to be offered to all healthcare professionals involved with the care and support of all primary and secondary breast cancer patients
. Better signposting between the NHS and cancer support charities so that patients know they can get emotional and practical support if they and their families and partners need it

Breast Cancer Care’s survey has received backing from the Royal College of Nurses (RCN). Dr Peter Carter, Chief Executive and General Secretary of the RCN, said:

“The RCN fully agree with the recommendations of this survey as nurses also believe that breast cancer patients would benefit from receiving psychological support as part of their care.

“We also firmly believe that every person with breast cancer, their families and carers should receive ongoing support from a specialist breast care nurse. These nurses are specifically trained and are able to provide the vital information and high quality care that is needed during and after treatment.”

Ends

Note to editors

For more information call Ian Manley on 0207 960 3450 or 07702 901 334 (out of office hours) or email ianm@breastcancercare.org.uk

1 – NICE (2004) Improving supportive and palliative care for adults with cancer; the manual. London, National Institute for Health and Clinical Evidence.

2 – NICE guidance states that:
Commissioners and providers of cancer services, working through Cancer Networks, should ensure that all patients undergo systematic psychological assessment at key points and have access to appropriate psychological support. A four-level model of professional psychological assessment and intervention is suggested to achieve this.
– http://www.nice.org.uk/guidance/index.jsp?action=download&o=28819

Breast Cancer Care is here for anyone affected by breast cancer. We bring people together, provide information and support, and campaign for improved standards of care. We use our understanding of people’s experience of breast cancer and our clinical expertise in everything we do. Visit www.breastcancercare.org.uk or call our free helpline on 0808 800 6000.