For over 20 years, I have been a carer. I care for my daughter Susan who lives at home with her family. Susan is a young woman with a profound mental and physical disability. She is totally dependent on others for all her needs, so my many years' experience of caring have been at the most demanding level. This can only increase as she and I get older. I have also cared for both my parents.
Due to my daughter's profound disabilities, I have had constant involvement with the NHS for more than two decades. I have experienced some of the best and some of the worst it has to offer.
My daughter uses the NHS more than most, because of her needs. Susan cannot stand, walk or talk. She has no purposeful hand use, has contractures of her hands and feet, curvature of her spine, suffers chronic bowel problems, has breathing abnormalities, has the cognitive level of an infant, is doubly incontinent, epileptic, and lives with a great deal of pain and discomfort. She is very often selfabusive. My 60-hour week of caring often increases when I am wakened in the middle of the night by her screams, or the sound of her punching herself with clenched fists. Susan needs one-to-one help at all times. I love, value and respect my daughter enormously - although if there is another life, I am not coming back as a carer; It is too much hard work.
We are not so different, you who work in the NHS, and me (except I can never walk away). We share limitations in resources, time, energy and ability. We both have to prioritise, often between the urgent and the important. We may become despondent, impatient and exhausted. We also have choices. In essence, these choices are not so different. I have chosen to believe my daughter is a person with a disability, not a disabled person. To believe otherwise dismisses the uniqueness of the individual. Those who take care of people often assume control.
Top of my wish list as a carer would be interpersonal skills training for everyone in the NHS, from the porter to the professor.
Porters need to understand the difference between pushing a trolley that conveys files, and a trolley that conveys a person.
Professors need to value the person more than the issue or disorder with which they are dealing.
The most difficult challenge for all staff would be to unlearn. Past ways of doing things are not easily changed: we often communicate with the role rather than the person. So I would like this human relationship training to be offered to mixed groups of staff, including porters, administrators, nurses, doctors and managers.
Staff deserve training that enables them to provide a more meaningful service to others. I need to believe that those who offer support are adequately supported themselves.
My next priority would be a more holistic approach to patient care. My dad was diagnosed with terminal cancer at the end of a three-week stay in a major Glasgow hospital in 1999. He was given the news in my presence one day and I took him home the next.
He entered the hospital a frail, weak man and left even weaker in body and mind. He and I left the hospital on a Friday. I was taking dad home to my disabled mother (dad was mum's main carer). The house had many stairs.
Among his many problems, he was incontinent.
My first task was to buy a bucket. No-one had offered disposable incontinence aids when he was discharged. No-one had considered how I could cope with my dad and disabled mother in one house and my disabled daughter in another.
Thankfully, my brother lived with my parents.
Thankfully, too, I know the system and eventually accessed all that I could get to support him. I even used some of Susan's aids to assist him.
My dad deserved better. Eventually, he got it, in the form of hospice care. Here, he was treated with great dignity and respect. He was a person who had cancer, not a cancer patient. I read somewhere that a hospice is more than a building - it is a philosophy of care.
I can see no reason why that philosophy cannot be adopted in hospitals. I held my dad in my arms when he died in that hospice. He had privacy, dignity and pain relief. And I had the support of caring staff.
Contrast this to the person dying in a ward behind curtains during visiting hours, with the muffled sobs of relatives audible to every stranger. At the moment we have a fragmented NHS which is service-led, not person-led. This must change - and soon.
My third priority would be defining the needs of patients and their relatives. I believe that before you refine the service, you must first define the need.
Please consider spending at least two hours in every section of your hospital or place of work to which patients have access. Be still. Just observe - and you will learn so much. It will give you a sense of what is truly needed. I was stunned to find an oncology outpatients department with fixed seating.
I was saddened to see a patient die behind curtains when a side room was needed. I feel angry when I see side rooms used for storing equipment. I get frustrated when people with an impaired ability to understand time and space face lengthy waits in outpatient clinics. A simple coding system could help them. I am exhausted when I wait 45 minutes with my diabetic friend at her eye clinic, without so much as a coffee machine. I am dismayed at the lack of toilets for disabled people. Quite often the most simple adaptation can have a positive impact on patient care.
My next priority would be a more flexible health and social care service. When Susan left the children's hospital, where all services were provided under one roof, I was lost. I had no idea where she could go for specialised care. I still have to work between various hospitals in certain matters.
When Susan became ill, I was fortunate to find a consultant who was, and still is, a good support to both Susan and her family. But this happened by chance, not design. Susan had three emergency admissions last year. My GP and her consultant liaise together and negotiate Susan's admission into his ward where the staff, who are familiar with Susan's needs, can offer continuity of care.
My husband and I can always stay. We each do 12hour shifts when Susan is admitted, not because we always want to, but because staff cannot provide the one-to-one attention Susan requires. The greatest resource disabled people have is their family.
Last November, I was sitting at my daughter's hospital bedside, several days into her second emergency, when word reached me that my mum was waiting for an ambulance to take her to hospital. I dashed across the city and arrived at the accident and emergency ward to find my mum seriously ill, requiring admission to the highdependency unit. Five hours later, we were still in the A&E. She endured appalling care. No-one of 77 should spend hours in a corridor.
Yet no-one was unkind - only unaware. Staff, in order to survive, had accepted the unacceptable and expected patients and relatives to accept this too.
When we fail to be horrified, we fail people.
I spent the next five days living between two hospitals. The care and support I received at my daughter's hospital was second to none. Although I spent many hours a day with my mum, I never got to speak to her consultant until he approached me on the fifth day to tell me she was dying. He assured me that my mum would suffer no pain.
I stayed with my mum until she died at 5am the next day. Although she was in a high-dependency unit, it took one-and-a-half hours for a doctor to attend her when she became distressed and in pain.
Both hospitals were under pressure but they are worlds apart in the delivery of care and good communication.
The NHS plan says the NHS is about people:
patients and families. Whatever you do, it will only succeed if users and carers accompany you on every step of the journey from consultation to decisionmaking. If you want to know what is needed in the NHS, ask the audience. They are usually right.
I firmly believe that nobody cares how much you know, until they know how much you care. All that you do, embrace with care. We may not always be able to cure, but we should always be able to care.
Where I am today, you could be tomorrow.
Isobel Allanis a committee member of Carers National Association Scotland. This is an edited version of a talk she gave at an HSJ/Dearden conference on implementing the Scottish plan, in Edinburgh.
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