Who says we care? Doreen’s Story

We like to think we live in a caring Britain, a society where the frail, aged and the sick are looked after. In theory, we have clearly defined clinical procedures ensuring this is possible. But are we really conning ourselves? Take for example the case of Doreen, a 74-year old widow suffering from late stage non-Hodgkins lymphoma, angina, low blood pressure and MRSA.

Doreen lives in a small two-bedroomed house in a large urban area in the Midlands region. Her home has a steep and narrow staircase and toilet facilities are on the ground floor. She has a bath, but no shower facilities. At no time was any help offered to ease this problem.

When Doreen went to the doctor five years ago, she was diagnosed with a leg ulcer on her left leg and the district nurses were given the responsibility of applying compression bandages to treat her legs. Not long after she was also diagnosed with MRSA and, because Doreen was infirm, the district nurse did these at her home.

Unfortunately, Clinical Practice Guidelines issued by the Royal College of Nursing (2006) indicate knowledge of best practice in leg ulcer care falls far short of what is ideal. In the case of Doreen, this became disturbingly apparent.

The ‘ulcers’ worsened over the next 4 years until both legs were affected, causing her considerable pain, until finally (and after considerable nagging by the patient), Doreen was referred to a skin specialist.

By now the ‘ulcers’ had increased in size and affected both legs, severely restricting her mobility. In response, the district nurse contacted the hospital and she was given a commode and walking frame.

Although the community nursing team were continuing to treat her on a regular basis, none of them thought to follow RCN clinical guidelines, despite evidence of possible malignancy.

Finally, after several postponements, Doreen saw the consultant. On seeing her leg, she was advised her ‘ulcers’ were in fact cancer and that both legs were affected.

After having removed the dressings, the consultant apologised as they did not have any suitable dressings available. It was yet another example of bad practice and one Doreen was well used to. Fortunately, Doreen had anticipated the problem and brought her own dressings.

Further investigations to establish the extent of the cancer were set up, meanwhile the district nurse continued to visit to treat the legs for ‘ulcers’. It took the patient to inform the nurse of the actual diagnosis.

Following tests it was proposed she should commence chemotherapy and undergo plastic surgery to remove the cancerous tissue. She was also advised that she did not have MRSA. Two weeks before the surgery, the district nurse called to arrange appropriate barrier treatment for the MRSA prior to the surgery. When Doreen advised the nurse she did not have MRSA, she was informed she did have the condition and treatment was essential.

Doreen was advised to take oral morphine an hour prior to the treatment and expect the nurse to visit her home to apply the necessary lotions. The nurse arrived several hours late, by which time the morphine had worn off. She was told to take another dose and 10 minutes later the lotiosn were applied, causing Doreen a great deal of distress and pain.

A week prior to surgery Doreen was referred to the plastic surgeon, who advised her that there were now 83 incidents of cancerous tissue on each leg. Plastic surgery was therefore not an option prior to chemotherapy – the earlier MRSA treatment and pain had been unnecessary. Furthermore, the consultant once again confirmed that she did NOT have evidence of any MRSA!

She was then advised to contact the haemotologist with considerable urgency as the cancer was now seen to be aggressive and required urgent chemotherapy. When she asked if somebody from the consultants’ team (a secretary or junior member of staff) could do this on her behalf, she was advised: ‘It would be better coming directly from you.’

The consultant asked to see the leg and when he had finished the examination, discovered they had no replacement dressings. The old dressings were consequently returned to the infected area.

The next day Doreen contacted the haemotologist, only to find his secretary was on annual leave and to leave a message on her voice mail. Rather than do this, Doreen spent the next hour negotiating the departments until finally she was put through to s temporary secretary who said she would try to help.

Two days later the district nurse called to dress the ‘ulcer’. By this time Doreen has lost all confidence in healthcare services and advised the nurse that she did not have ulcers, but that it was cancer.

Healthcare services have largely failed to address many of her daily needs. When the consultant finally saw her and diagnosed cancer, he advised her that she should have been diagnosed and referred much earlier. Indeed, his criticisms are not unreasonable. Simon et al (2004) were quite clear in their recommendations when they suggested that

‘... direct access to appropriate specialized hospital services is essential for the investigation of underlying vascular disease and for microbiology,
histopathology, and dermatology.’

Clearly the GP and community nursing services have failed and it now remains a matter of debate as to whether the misdiagnosis and reluctance will have a catastrophic effect on her future.

Doreen has now lost all faith in her GP. Unfortunately, she seldom sees the same district nurse, so she has been unable to develop a rapport. Those that do visit now have such a large caseload, they have no time to sit and discuss her treatment. Instead, they appear more concerned with rushing through doing what they have to do in order to make their way to their next patient.

This has led to nurses arriving at her home without clean dressings

Now there is one question that puzzles me - the CREST guidelines (1998) state the patient should be referred for specialist care if the ulcer does not decrease after 12 weeks. In the case of Doreen, her ulcers continued to grow for 4 years and no-one did anything! Guidelines were flouted, care plans largely ignored, available knowledge and examples of best practice dismissed. Why?

a) Have we become so uncaring as to now no longer feel we need to be accountable?
b) Are older people services so run down that people can fall through the gaps?

It seems the answer to both questions is - YES!

References:

CREST (1998) Guidelines for the Assessment and Management of Leg Ulceration. Department of Health. London

Royal College of Nursing (2006) The nursing management of patients with venous leg ucers. Royal College of Nursing. London.

Simon, D.A.; Dix, F.P.; McCollum C.N. (2004) Management of venous leg ulcers. British Medical Journal, 328;1358-1362

Slinging out the elderly with the trash

Perhaps it’s because I’m closer to needing services for the elderly that I’m pretty horrified by reports today from the Health Services Ombudsman that provision is failing to treat older people with care, dignity and respect. I’m not sure why I am surprised, because I remember forty years ago going into a care home and being pretty appalled by the treatment I saw.

Even then nurses and care workers talked to elderly patients with that condescending and patronising lilt. You might have come across it yourself:

“How are you today … dear.” Not even my wife calls me dear, so by what right do you, a seventeen year old girl, have to call me ‘dear’. I am not your ‘dear’; I am a person who has earned, through years of hard labour, the right to respect.

“Now come on Annie, you really should eat you dinner – it will do you good.” No it won’t. It is hospital food. The cabbage has been boiled for over an hour and has the consistency of limp seaweed; it tastes like the algae from a brickworks lake and has the same colour as my fingernail. The chips are soggy and cold and the pie feels like it has been heated under the steamer on an espresso machine.

“Hello John, how are you today?” Which we all know is really shorthand for - “Good grief John, haven’t you had the decency to die yet? I’ve had this room booked for nearly two months and I do wish you’d get on with it.”

What about the entertainment care homes offer the elderly? Why do we assume they all enjoy tea dances, singalongs and bingo. Now readers I have a favour to ask all of you. If ever I have the misfortune to develop dementia, I want you all to promise me that before I have to play bingo, you will jointly and mutually euthanise me. As for the singalongs? Why do they assume that because you are old, you know songs from the Second World War? Not sure about the rest of my contemporaries, but I know the lyrics to a few Led Zeppelin and Rolling Stones songs.I could even croon “Boom Boom Pow by the Black Eyed Peas if you give me a bit of notice, though I suspect younger readers might be shocked by an oldtimer warbling a few curse words.

Old people aren’t looking for special privileges. They don’t want to be treated as special and different, but they do feel they have a right to respect – is that so awful? Is it so terrible that a woman in her seventies should have the right to undress in private, instead of having care assistants staying in the room, staring at her? Is it so bad a man, who has worked in a factory for over forty years, should feel it unjust that when he rings a bell for attention because he is in pain, no-one comes, or if they do, he feels a burden.

What is it about western society that degrades our elderly in this way? In eastern cultures older people are revered and respected. Here in the UK we see them as a nuisance.

You know something? A couple of years ago I was doing some research into problems facing older carers and I saw something I thought I would never see in a civilised society. I came across a woman in her late seventies who had a forty-four year old daughter with severe learning difficulties. The older woman had no support from external carers – she did all the work herself, even though she had quite severe heart problems. On my visit, I watch this wonderful old woman lift her fully grown daughter out of her wheel chair and carry her to a nearby sofa. I would guess the daughter would have been about 90lbs – certainly more than you would want to lift at that age. She never grumbled, because for her it was a joy to look after her daughter, even though caring was probably killing her. Can we truly say that, as sons and daughters, we would do the same for our parents, or grandparents?

She proved something to me though – older people are strong and resilient and can and do regularly cope with strife, difficulties and problems. They are talented and ingenious in their tactics for coping with the ardours of life and problems the system places upon them.

But there is more that could and should be done. If we ignore the needs of the elderly, we are not only dismissing part of our society, we are saying something about ourselves. Let’s face it, the message we are sending out is that people are disposable and once you go passed your ‘sell-by date’, you have no use.

To my mind, it’s no way to treat people and no way to lead a society.