‘Listen’, ‘partnership’, ‘empower’, ‘share’, ‘recognise’, ‘respect’

These are terms that we are used to seeing in the context of independent advocacy support.  I have in fact picked them out of the revised Code from regulator, the Nursing and Midwifery Council (NMC). Although my own background is not in health I was familiar with the previous Code from 2008. Section 4 of that version states ‘You must act as an advocate for those in your care, helping them to access relevant health and social care, information and support’. At Dorset Macmillan Advocacy as part of the training for our volunteer advocates we had discussed how this might make health professionals more open to the support that we can offer but how it might also lead to them seeing it as unnecessary since they already act as advocates for their patients.

The revised Code has widened this aspect considerably and now says: ‘Make sure that people’s physical, social and psychological needs are assessed and responded to. To achieve this, you must: … act in partnership with those receiving care, helping them to access relevant health and social care information and support when they need it, and act as an advocate for the vulnerable, challenging poor practice and discriminatory attitudes and behaviour relating to their care.’ The NMC says that the Code has been written with the input of many patients, carers, nurses and midwives. It is shaped around four statements, which state that good nurses and midwives will:

• Prioritise people • Practise effectively • Preserve safety, and • Promote professionalism and trust.

Jackie Smith, NMC Chief Executive and Registrar, said on 31^st March: “This is a landmark day for every nurse and midwife in the UK, and for the people they care for. The Code is fundamental to protecting the public. It sets out what patients want from nurses and midwives, and puts public expectations at the centre of professional practice.” Macmillan Cancer Support have noted that ‘The changes to the code include new sections that outline professional duty of candour, and the responsibilities of all nurses and midwives to raise concerns. The focus of the revision is to drive continuous improvements in the quality and safety of care.’

I asked one of our own volunteer advocates with a unique perspective, since she is also a practising nurse, whether she felt that the revised Code would make it easier for our peer volunteer advocates to work with health professionals in supporting their advocacy partners. She said “The new Code will bring benefits regarding better communication between health staff and advocates. We now have the professional duty to facilitate communications among everyone that is taking care of a person. The new code has underlined even more the centrality of the patient, which means ‘do the best for them’, and implies cooperation among all their carers.  Another important point that for me from the advocacy perspective is that nurses have to delegate to whomever can do the best for the patient and can complete the task at the required standard, even if they are not a health worker.”

I really recommend reading the revised Code to get an insight into what the NMC has found to be the most important aspects of patient and public expectation. The Code is extremely readable and well-constructed.  We will be referring to it in our volunteer training. Indeed many of the requirements of nurses would be transferable to the role of independent advocate especially those concerning clear communication: ‘use terms that people …can understand, use a range of verbal and non-verbal communication methods…check people’s understanding’.

Most importantly for me the Code recognises for the first time that a patient may be supported by an advocate and mentions the role directly in the third section entitled Preserve Safety. ‘Be open and candid with all service users about all aspects of care and treatment, including when any mistakes or harm have taken place.  To achieve this, you must… explain fully and promptly what has happened, including the likely effects, and apologise to the person affected and, where appropriate, their advocate, family or carers.’ I feel that the revised Code will serve as a strong foundation for effective cooperation between peer volunteer advocates, their advocacy partners – the older people affected by cancer, and the clinicians delivering their treatment and care.

Kathleen Gillett, Dorset Macmillan Advocacy

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Treatment choices can be bewildering

Mr Charles Carter, Consultant Urologist at Royal Bournemouth and Poole Hospitals,  said that while most men like to have a choice of treatments for prostate cancer ‘after all it’s their body’, some find the choices ‘bewildering’.  He described how a multidisciplinary team will discuss each case to identify all the options of benefit.  Following the consultation where a ‘steer’ can be given the patient can discuss his own situation further with the nurse specialist, review their clinic letter and weigh up the printed information from the booklets provided.  Mr Carter noted however that many decisions are affected by people’s knowledge of the outcomes that their friends have had from various courses of action.

Graham Willetts is pictured with Sue Higgins Director of Nursing at Lewis-Manning.

Mr Carter was speaking as part of the Autumn series of educational seminars at Lewis-Manning Hospice in Poole.  Graham Willetts, Chair of Dorset Cancer Champions Board, said afterwards that the talk illustrated how the advocacy challenge is particularly acute with prostate cancer in relation to helping people make the right choices about screening, surveillance and treatment. Lewis-Manning Hospice offers free specialist palliative nursing care to local people living with cancer and other life-limiting illnesses in a brand new facility with stunning views of Poole Harbour. One aspect of the organisation’s stated mission is ‘Raising awareness of what living with a life-limiting illness means, through education and provision of information to the patient, their carers and the community as a whole.’ The seminars are aimed at healthcare professionals, social workers, students and those interested in the care of those with long term life-limiting illnesses and the survivorship agenda.

Kathleen Gillett, Dorset Cancer Advocacy

‘Tell us what is really happening to you’

Health professionals want and need to know about the side effects that people are experiencing as a result of cancer treatment.  This was the message that came across strongly from Dr Rachel Hall, Consultant Haematologist, and Lisa Hammond, Stem Cell Transplant Specialist Nurse, when they spoke to the Dorset Myeloma Support Group in September.

Marion Summers, a volunteer advocate with Dorset Cancer Advocacy, is the support group’s organiser and works with the Group Leader Carole Jones. Dorset has double the national incidence of this rare cancer of the bone marrow owing to demographics but still a GP may only see one case in their whole career. For this reason Dorset GPs are visiting the clinic at Royal Bournemouth Hospital each week to increase their understanding of the disease and its diagnosis.

Rachel stressed that ‘one size does not fit all’ and that each individual needs to be carefully assessed when considering treatment options. The assessment takes in to account factors such as their environment, their support network and any other illness or health problems that they face.  Rachel said that she favours a multidisciplinary team approach and continuity from the health professionals’ side.

Front L – R Marion Summers, Rachel Hall, James Summers; Back L – R Lisa Hammond, Carole Jones

The management of side effects is crucial in aiming for good quality of life for patients. Lynn Maxwell of the Community Cancer Nursing Service, said that her team advise patients to document their side effects and bring this record with them to appointments.  Rachel Hall said it helps to be able to look back over several months and pinpoint possible causes of certain side effects. She described how having a diary on hand avoids the possibility of seeing the doctor after a particularly good week and forgetting to mention that the previous three had been very difficult.

Some patients may feel they can’t or shouldn’t talk or complain about side effects but Lisa Hammond said ‘Be honest… tell us what is really happening to you.  Don’t be afraid that we will stop your treatment. A lower dose could reduce or eliminate the side effects.’

Rachel recommended that patients prepare for an appointment by writing down any specific questions about their treatment, then if the answers given aren’t clear asking for more explanation. Taking up the opportunity to talk to the nurse specialist at a separate appointment for more information and to gain a thorough understanding can help too.

Marion said afterwards ‘I think the participants benefited from Rachel Hall’s talk because she was able to explain the aims of treatment in achieving a remission or plateau of multiple myeloma, to preserve a quality of life, extend remission and length of life and to prevent complications and control symptoms. She also explained better use of existing drugs and what new drugs are on the horizon.  Participants had the opportunity to question Rachel and Lisa about different treatments, the advisability of having vaccination against Shingles, and the time scale of when new drugs will become available.  The feedback from the members after the meeting was very positive.’

Living with the side effects of medication

Through advocacy we are supporting people affected by side effects of medication to see what can be done to manage and, where possible, reduce them.

The side effects of Tamoxifen were the subject of a discussion on BBC Radio 4’s Woman’s Hour earlier this month.  New research from Breast Cancer Campaign has shown that women who give up taking the breast cancer drug because of the side effects may be at risk.  The very nature of the side effects themselves can be a barrier to getting help with them and sharing feelings about them with a trusted volunteer advocate could be the first step towards managing them better.

Dr Daniel Rea, Consultant Medical Oncologist at Queen Elizabeth Hospital in Birmingham, suggested on the programme that since the side effects can be embarrassing for women ‘the person they can talk to with more time is the Clinical Nurse Specialist  who is skilled at drilling down and understanding exactly what the patient is going through, and can act as an intemediary between the doctor and the patient to make sure that we’ve listened properly, have heard the message and then try to address it’.

Describing the how breast cancer treatment can be followed by years of medication Baroness Delyth Morgan Chief Executive of Breast Cancer Campaign said ‘the hope for many in the cancer community is that in the future more cancers will be able to have this sort of chronic management but it means that the support has to be in there to help people deal with the day to day living with it’.