Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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this is about quality of life and life expectancy not about bureaucratic posturing and pounds, shillings and pence

Today’s post is from Rosie Young a peer advocate at Getting Heard (formerly Oxfordshire Advocacy). Rosie is also a local and National Cancer Champion and an older person affected by cancer who has used the Cancer, Older People and Advocacy service herself:

I read with interest the final report from Patty Doran, Cathie Marsh Institute for Social Research, The University of Manchester. 

A month ago Oxfordshire Advocacy’s Patient Experience Group, who are a group of volunteer advocates working on the Cancer, Older People and Advocacy Project,  currently also receiving cancer services themselves gave feedback to Healthwatch on our  experiences locally.  Surprise, surprise! this mirrored the key elements of the report and I share a few examples from this group below but first, a reminder of the Law on Consent, Risk and Information…

Montgomery v Lanarkshire Health Board Judgment 11th March 2015

The Supreme Court was fortunate in having submissions from Andrew Smith QC on behalf of the GMC.  The GMC submitted that an approach based upon the informed involvement of patients in their treatment, rather than their being passive and potentially reluctant recipients, can have therapeutic benefits, and is regarded as an integral aspect of professionalism in treatment. This was repeated in the Judgement in the Supreme Court

The court specifically stated that a patient must not be bombarded with technical information It is not up to the patient to find the correct expression of words. The onus is now firmly placed on the doctor to find out what their patients want to know

The doctor is under a duty to take reasonable care to ensure that the patient is aware of any: potential benefits, risks, burdens, side effects of each option, option to have no treatment and no pressure on the patient to accept advice.

 These stories are from Getting Heard’s Patient Experience Group who are not backwards in coming forwards!!

 One volunteer was told by the consultant “It’s your body – it’s up to you whether you have a biopsy or not”.  She added ‘I was given no explanation by my consultant as to what the consequences would be if I didn’t have the biopsy or what the follow up would be. Because of the change in my PSA reading (which had been stable for the past 5 years of tests) I decided to have the biopsy which indicated the presence of cancer. At no stage was I given any advice whether to have the procedure.’

Getting Heard logo

Another volunteer felt some pressure to accept the ‘Gold Standard’ and alternatives were dismissed. ‘After an operation in my left lung for cancer I was diagnosed a year later with a primary in my right lung. I was under considerable pressure to have a lobectomy from the Clinical Fellow and Specialist Nurse despite having significant risk factors which would have impeded recovery. In consultation with my GP, Palliative Nurse and family I opted for an ablation. The Specialist Nurse when I told her (having submitted a risk assessment) contacted my Palliative Nurse to question my capacity to make a decision.’

Below are some more examples from our volunteers  where they felt they should have been given better information.

Number of operations required

‘The number and extent of operations should be clearly spelt out. I was told that I would need a second operation for my agreed implant only as I was going to the theatre for my mastectomy. The implant later had to be removed in a third operation’

Long term effects of operations i.e. nerve damage

‘I have gone from a sixty plus active person to needing a blue badge, upper limit attendance allowance with severe restrictions on my social life because of pain’

Dismissing the long term effects of treatment

‘The long term effects of chemotherapy and radiotherapy should be clearly identified. I was never told about the lifelong problems to be encountered with radiotherapy, from which I am still suffering.

Attitude of my oncologist dismissing treatment that is causing anaemia as of little consequence – putting in an email that he would ring me if he had time – ‘

Side effects and effectiveness of drug therapy

Medication, such as Anastrazole, should be discussed and the side effects clearly spelt out. I have just cancelled my final two years of Anastrazole due to side effects and having discovered, with some difficulty the percentage risk increase of a recurrence of cancer is only 2%.

Rosie

Rosie

Overall our Patient Experience Group felt that urgent retraining in the legal and professional practical application of all aspects of Consent, Risk and Information is needed fast and nationally.  We must remember that this is about quality of life and life expectancy not about bureaucratic posturing and pounds, shillings and pence.

Rosie Young, Getting Heard (formerly Oxfordshire Advocacy)


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OPAAL to receive share of £4 MILLION to support proposals in the Health and Care field

OPAAL is to get funding to develop new, innovative approaches to health and care, actively share excellent practice or improve integrated care and efficiency.

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Voluntary sector organisations submitted funding bids to the Department of Health setting out how they could help meet the Departments objectives of better health and well-being and better care for all and how their proposal has potential for national impact.

Minister for Care and Support Norman Lamb said: “These projects play a crucial role in supporting people, their families and carers. They are examples of just some of the excellent and innovative work going on throughout the country in the voluntary, community and social enterprise sector – all of which help to create and support strong and resilient communities.”

Norman Lamb MP

Minister for Care and Support, Norman Lamb

The Department of Health funding comes from the Innovation, Excellence and Strategic Development Fund (IESD) and will cover the cost of a Development Officer post for 4 days a week for 3 years. The Development Officer will work on a  new OPAAL project called Older People’s Cancer Voices alongside the Flagship Cancer, Older People and Advocacy Project and will build relationships between Clinical Commissioning Groups and independent advocacy organisations. Initially the project will work with pilot partners Beth Johnson Foundation, Dorset Advocacy, Help & Care and Sefton Pensioners’ Advocacy Centre to create a library of filmed case studies. These real life stories will, like our recent publication Every Step of the Way, aid the buy-in to advocacy and support Commissioners, Health & Wellbeing Boards and Healthwatch to get a better understanding of the impact that advocacy can have.

We aim to produce best practice guidance for use by providers of advocacy services to older people to help them build relationships with Commissioners. Eventually this guidance will be made available across the whole of the advocacy sector. This guidance should ultimately lead to greater opportunities for older people to influence service delivery through Health & Wellbeing Boards and Healthwatch, promoting equality of opportunity along treatment pathways.

Kath Parson

Kath Parson

Kath Parson, OPAAL’s Chief Executive, said ” We are absolutely delighted with this award, this money will help us bring the voices of older people directly to the attention of local decision makers. We aim to support older people to make films of their stories to be used to educate and inform local decision making ensuring that independent advocacy becomes a key component of age friendly care using evidence we will gather as shining examples”.

We are currently recruiting for a new Development Officer and hope to see the project get underway in the Autumn. If you are keen to work with us on this exciting project you can download the application pack from the home page of the OPAAL website by clicking here. The closing date for applications is Tuesday August 12th and interviews will take place in Stoke on Trent on Wednesday 10th September.

Marie McWilliams, National Development Officer, OPAAL