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Action for Eileen

An action and support group for cancer patients aged 50 years and above

Contact : Lisa MacMurdie <Lisa.MacMurdie@wagnrail.co.uk>

Campaign objectives

• To encourage people, when diagnosed with any form of cancer, to challenge health care professionals regarding treatment choices available to them
• To encourage discussion regarding likely outcomes of the cancer treatments which are available and the implications involved with treatment/s so as they can make an informed choice
• To encourage people to speak up or complain during their treatment plan if they are not satisfied and not wait until it is too late - they must not be frightened to say if they are not happy
• To encourage discussion regarding resuscitation and to involve the patient and/or the next of kin in making decisions regarding DNAR
• To help stamp out ageism within the National Health Service and to stop people being denied treatment because of their age

Support group's objectives

• To address personal needs such as compassionate and religuous support where needed.
• To provide advice on how to approach hospital Trust's if not satisfied with treatment or care.
• To provide details of other support organisations appropriate to cancer and the over 50s.
• To publish a patients' newsletter regarding the work of the Action for Eileen campaign.

EILEEN WEBSTER
1931-1998 : Case History

Introduction

My mother was diagnosed with small cell oesophageal cancer in July 1997 at the age of 66. After this an almost unbelievable (though I gather fairly typical for her age group) chain of events ensued.

We as a family describe this as a 'catalogue of disaster' which resulted in all our hopes, of mum ever making a full recovery, being totally dashed:

• 'Urgent' chemotherapy commenced on 7^th August 1997 at North Middlesex Hospital following consultation on 5th August with Consultant Oncologist
• Admitted on 18^th August 1997 to North Middlesex with orbital cellulitis and no white blood cell count
• By 21^st August 1997 right eye had turned black, blistered, red and pusy (see photograph)
• Bacteria grown from the eye identified as a 'superbug', Pseudomonas aeruginosa (see enclosed article - unable to prove this was a hospital acquired infection though it is recognised as such) - family told that my mother had suffered a 'unique reaction' to the chemotherapy
• Doctors heard discussing whether the second chemotherapy dose should be 'lowered by 25%' (national average is 10-15%)
• Discharged from hospital 28^th August 1997 with no clear treatment or action plan until I organised a meeting with the Consultant concerned for 1^st September 1997
• At this meeting it was confirmed that this consultant could not give any further chemotherapy and would proceed with 'urgent' radiotherapy (urgent = within 24 hours according to hospital guidelines) as they 'had to act fast to stop the cancer from spreading'
• Following the loss of my mother's notes in the radiotherapy action plan pile and various other delays, radiotherapy was commenced on 22^nd October 1997; this meant she had received no treatment to the cancer for 76 days in total
• During radiotherapy she developed pains in her joints; x-rays confirmed that cancer had spread to the bones and the spinal cord, only a matter of time before it reached the brain
• Saw a dietician twice, which proved useless, during these six months and became acutely anorexic - weighed only once in six months and was under five stone when she died
• Unable to eat hardly during last six weeks of life but never offered gastro-feeding option
• Condition became terminal at the end of November 1997 but family not told
• Became partially blind and deaf in right eye following Pseudomonas infection
• Lower eyelid completely destroyed (eaten) by the 'superbug' and plastic surgery was arranged for January 1998
• Possibly developed Psuedomonas septicaemia as a direct result of the original infection; to my knowledge this condition was never treated and my mother must have been suffering from this for some time before her death which only added to her distress and discomfort
• Admitted to Chase Farm Hospital in Enfield on 8^th January 1998 for blood transfusion only. Entry made in the notes on 11^th January 'not for resuscitation' but family not told about this decision
• Died on 18^th January 1998 at Chase Farm Hospital. By this time my mother was anorexic, partially blind and deaf, incontinent, paralysed, covered from the waist down in bedsores and badly disfigured facially.

In 1982 my mother was misdiagnosed for six months by her local GP (she had bowel cancer) and fortunately the disease was caught just in time. Sixteen years later the very same GP was still practising at the same surgery and my mother had to come into contact with her again. On two occasions she refused to come out to my mother when called for an emergency visit and such is the severity of the complaint against this individual that I have referred the case to the General Medical Council. I cannot believe that people are treated like this, as if they have no rights whatsoever and one certainly gets the impression that once you hit 60, some medical 'professionals' simply do not seem to care what happens to you. It's appalling.

Chemotherapy overdose?

Mum was in a dreadful state after the chemotherapy 'went wrong' (she was told she was 'unique' by the hospital) and we have always been concerned, particularly after hearing two doctors discussing whether lowering the next dose would help matters, that she received an overdose. Naturally North Middlesex deny this but then it would be hard to prove either way after four years. They recently investigated the notes of 18 patients who received chemotherapy treatment under another consultant, about a year later, whose prescriptions may have been forged and one patient died due to a forged prescription causing an overdose (article attached). I have finally been assured, but only thanks to pressure from my local MP, that my mother was not amongst the 18 patients being investigated. It is, however, extremely concerning.

NHS Complaints Procedure
Fear of complaining

When Age Concern launched their national campaign regarding the issue of resuscitation, I wrote to them and have been working with them ever since. They have recently used quotes from my letters in the publication 'Speaking Out' which focuses on the elderly's fear of complaining about their treatment; my mother did not want us to complain at the time as she was certain it would affect her treatment. On Wednesday 28 February 2001 my mother's case received national media coverage on BBC Breakfast and Lunchtime news, Today programme, BBC News 24 and BBC Radio 4 '5 Live'. Further coverage was received on Channel 4 News and BBC Radio 4 on 27 March, live on Radio 4 'Case Notes' programme on 3 April and on BBC Regional Radio on 22 May. Obviously they were focusing on the issue of resuscitation and the new national guidelines, which had been launched and to be honest, the issue of 'DNR' is only a small cog in the wheel of the case regarding my mother.

NHS Complaints procedure - where we are now

We are still, after three years (in May) at the first stage of the NHS Complaints Procedure with the North Middlesex Hospital. This is apparently 'very rare' so perhaps you can see for yourself how complex and how unique, this case is. We requested an Independent Review (second stage) last year and the Convenor felt that certain issues should return to stage 1 so has refused us an IR at this stage and have instructed the hospital to investigate the outstanding and additional issues further. If we are not satisfied with further investigations, then we have to right to reapply for an IR. They have made several half hearted attempts at apologising for the 'catalogue of disaster' my mother went through but this isn't enough. We are now waiting for the hospital to organise meetings with independent specialists, as recommended by the Convenor, who will look objectively at this complaint and comment on the hospital's management of my mother's care. What we really want is a public apology and for the hospital to admit publicly that they could have done a lot better. We also want their assurance that they will change their working practices to ensure nobody else, irrespective of their age, suffers in the way my mother did. That is really what this is all about.

Discrimination

I feel that my mother's age, her social class and the fact that she was a heavy smoker, all went against her, which is pure discrimination. Being an ex health service worker myself, I know that this happens and that they often 'let people go' because of their age and the cost involved in treating them! She said herself that they were withholding treatment from her because she was 'too expensive and too old to treat'. It must be awful to die feeling that way.

Action for Eileen

I am now launching a campaign of my own to help people of 50 years and above, to demand better cancer treatment and care for our aged population. My intention is to provide advice and support to this age group and their carers, in terms of challenging the medical professionals regarding the cancer treatments available to them. In addition to this, I have written to Alan Milburn outlining the campaign's objectives which dovetail quite nicely with the work Age Concern have been doing on 'ageism within the National Health Service'. What I really need now are other people to contact me with their experiences so as I can take their issues forward with my own and help to strength the campaigns' aims. We will also form a cancer patients support group to help people who are currently experiencing the 'cancer patients journey' through the NHS maze.

Communication

I believe every individual has the right to make an informed choice about the treatments that are on offer at the time and should be acquainted with the side effects and full implications that they may have to consider in connection with their choice. The key to all of this is good communication and had this been better in the case of my mother, half the things we are complaining about now could have been avoided.

Conclusion

It is my intention to continue to pursue my family's complaint against the hospital concerned with my mother's care but I am very keen to use her case as an example of what should NOT happen. I know I cannot bring my mother back but I want to highlight her case in order to try and prevent some other poor soul suffering in the way that she did. The quality of life during her last six months was nothing short of appalling; this cannot happen to someone else and it is simply unacceptable to die a 'medieval' style of death in the 20^th century, as it was then.

MEDIA COVERAGE TO DATE

ORGANISATIONAL AND PROFESSIONAL SUPPORT

July 2001

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