The patient journey

Last month you found a lump, where you most feared finding one. For a few weeks you have ignored it, pretended it wasn’t there, wished it wouldn’t be there next time you surreptitiously felt for it. But it is still there. Time to phone the GP.

Making an appointment
This is the most frightening call you have ever made. For the surgery staff, however, it is just one of dozens of calls that Monday morning. Mondays are always the busiest, call after call. You try to sound brave, matter of fact as you make an appointment.
    
Seven minutes with the GP during which your life changes for ever. Now you are on the way to NHS World as an outpatient.
    
Arriving at the hospital, it is difficult to park. You try not to lose your temper, but you are very very stressed. The time of the appointment creeps ever nearer. With only five minutes to go a space materialises. Money in the ticket machine, ticket purchased and you enter the hospital concourse.
    
Different signs in different forms direct you every which way. With your poor vision it is very hard to work out what is what. Eventually you find the waiting area for the clinic.
    
You sit quietly, hoping to remain anonymous. This is, after all, your local hospital in your local market town. Eventually your name is called out over the tannoy summoning you to a consulting room. So much for confidentiality.

An inpatient
The news is bad. An inpatient stay is necessary. There is a leaflet about what not to bring with you to hospital, but no way to phone or e-mail for answers to queries that occur to you before your stay.
    
The day finally arrives when you are to be admitted for your operation. It has been difficult to arrange cover for your job and help for your family because there has always been the lurking possibility of the whole event being postponed at the last minute. Now you just want to get it over as quickly as possible. You would give anything to be back in your previous life as you present yourself at the ward.
    
Throughout the preceding weeks waiting for admission, four things have really worried you:

• will I get a superbug?
• will I have any privacy?
• will I be in pain?
• will the staff be kind?

The Patients Association
At every stage of this journey, patients contact the Patients Association for advice that they feel unable to get elsewhere. More than forty years ago the charity was founded by patients who felt their needs, as customers of the NHS, were not properly thought through and given proper weight in decision making.
    
The NHS was then a mere teenager, but the worries of patients then, sadly, are just as relevant today. The rhetoric assures us that patients are at “the centre of the service”. The reality, however, is that the NHS still has not got this right. Organisations come and go, names change. More information is available on which patients can base the most important decisions they will ever have to take. Yet the difficulties persist.
    
Central targets may or may not apply to your condition. Clinical standards, care and drug availability vary widely despite huge sums of money spent on NICE to achieve the opposite. Your lump had better be “lump of the month” complete with its own “czar”. Our surveys show that patients loathe the postcode lottery and believe strongly that the NHS stands for National Health Standards, in other words equity.

Expectations
Regardless of the political arguments that rage about all of this, there are some elements of care that should not vary and should be absolutely standard, whether it is being given in Aberdeen, Aberystwyth or Amersham. There is quite enough data from patients, media and from its own byzantine complaints system for NHS managers and clinicians to be well aware of what patients need and expect. So let’s look at what those expectations are.
    
First, and above all other considerations, patients want to know that they will not be made any worse by contracting any additional infection. This is without doubt the number one priority for those who ring the Patients Association Helpline.
    
As more money than ever before has drained out of patients’ pockets and into the Service, they wonder how is it that budgets for the basics like cleaning, for staff training, for infection control are being cut? How is it that individual National Health Servants can get away with NOT making HCAIs the number one priority? To a patient this is unbelievable. For anyone in the NHS to be cavalier in this way undermines all the other rhetoric – especially that bit about “the people we serve”.
    
Most damagingly of all, it undermines the wonderful work that does go on day in and day out in the NHS. If it were a supermarket or hotel chain, there would be immediate action, probably involving a P45, against those individuals who put customers and the organisation at risk. But patients see little evidence of the leaders of the NHS shouldering responsibility for HCAIs. They are more likely to see efforts put into arguing why it cannot be resolved.
    
The President of the Patients Association, Claire Rayner points out that the number of patients affected by HCAIs is the equivalent of a jumbo jet crashing every month. Can you imagine the airline industry getting away with promise merely “to reduce the number of people dying by 50 per cent by 2008” or, worse, “learn the lessons” each time a plane went down?
    
So you wait in your hospital bed, worrying how clean and safe it all is - the sheets, the floor, the bin, your gown and the bedside locker. Who was here last? What have they left behind? Nurses tell us they spend a lot of their time dealing with such patient fears.

Privacy and dignity
Alongside this deep concern for safety, patients worry about their privacy and losing their dignity. The fear of being put in a mixed sex ward is not just confined to the elderly patient.
    
Promises made to end these settings are broken over and over again. The latest trick is to redefine what constitutes a “mixed sex ward”, though patients are not fooled for a moment.
    
Why should they have to worry about strange behaviour and assault as well as their illness? With all that money in the health service coffers no patient should have to use a bedpan with just a flimsy curtain for privacy. No patient should have to listen to the patient in the next bed use a bedpan. No patient should have to share their bedroom with a stranger.
    
No privacy means no escape from the smell or noise of others. When you are ill, possibly in pain, the last thing you want is noise and bad smells. Increasingly more of us live alone, so it is inevitable that what we mean by “privacy” is changing too. Standards are changing fast with even the lowliest B&B now expected to provide ensuite facilities. In NHS World this is regarded as an impossible luxury. New technology, kits and the like exist to make it a reality.
    
Meanwhile, the horror stories continue daily about facilities that would put a health service in the third world to shame. With the enormous PFI hospital building programme in train, how many are starting from the principle that patients are to be treated in single ensuite rooms?
    
As clinical possibilities expand, a patient’s level of clinical need may also increase. If the basics of care are ignored, however, length of stay is longer and more expensive as well as harder for the patient. “Convalescence” has become “Bed blocking” and money is being wasted.

Pain
Will I be in pain? This third worry, above, is an unspoken fundamental of a patient’s care.  Over the counter props exist to banish pain from our daily lives. We can pop a pill at the first twinge, perhaps we are becoming less and less able to cope with pain.
    
In hospital, and especially if you are elderly, attention to pain management can be a luxury. This is the one fear that unites us all. How often have you heard “I’m not afraid of dying. I just don’t want to be in pain.” Is it any wonder therefore that people are willing to donate large sums of money to hospices, the only setting where freedom from pain is the norm?

Food
And finally, food. Every other TV programme, magazine, conversation or book seems to be about food. The NHS merely eavesdrops. Patients have put up with one food stunt after another. Foodie celebrities have come and gone.
    
The real problem is that frustrated hospital caterers are expected to provide four-hourly gourmet delights and drinks for the price of a sandwich. And yet everyone concerned knows that good food, and the right help to eat it if necessary, is essential to recovery. It is also the highlight of a many patients’ day.
    
So what is the patient’s ideal environment for hospital care?

• A clean bed, sheets, gown, bin and locker - kept clean because it is everyone’s priority regardless of how grand their job title may be
• Privacy and quiet  - remember I am ill
• Pain relief when I need it
• Nurses who want to care for me, defend my interests and who understand that when you are worried sick, kindness counts for a lot.

Above all, we want a Service where staff believe “patients are the reason for the health service not interruptions to it”.

Vanessa joined the Patients Association in 1995 and was elected Chairman in 1999. She is now Head of Special Projects at the Patients Association.
    
Between 1990 and 1997 she was Chairman of a Dyfed FHSA, Dyfed HA and Dyfed Powys HA. She is also a former Chairman of the Welsh Association of Health Authorities and Trusts, elected by colleagues.
    
She is a member of the BMA Enquiry into Healthcare Funding.

For more information
Address: PO Box 935, Harrow
Middlesex HA1 3YJ
Email: mailbox@patients-association.com
Website: www.patients-association.org.uk