How it all began -
Most people think that nurses get accustomed to illness and death, but in my experience, this is not so. I can vividly remember children I have known, both those who have died and those who have survived against all odds: Jamie – the first little boy to die during my training; April who I bathed before her heart operation from which she did not recover; Heather, Dilbahadur and Anita….
Anita was brought into the British Military Hospital in Kowloon, Hong Kong on my first day there as Sister-in-Charge of the Children’s Ward, back in 1979. She had been riding in the basket of her father’s bicycle and tumbled out as he negotiated the busy roads and hit her head on the kerb. She was brought in unconscious and we could do nothing to save her and she died at six o’clock that evening, her father, a Gurkha soldier, was distraught and her mother, who spoke no English was disbelieving; she rocked her baby, imploring her to cry.
This tragedy made me consider more seriously an idea that had been at the back of my mind for some time. How do families cope with the death of a child? How do parents manage if they have a child who is so seriously ill that he or she needs constant care and attention, 24 hours a day, seven days a week? What happens to the other children in that family? Where can they go for extra help if there’s a family crisis?
I knew that some families in this sort of situation were offered help by a local hospital. The sick child would be admitted to the children’s ward to enable the rest of the family to have a limited break. But an acute children’s ward is not the right place for children with progressive, degenerative conditions. The care they receive is perfectly adequate, but there is insufficient time to treat them with the individual attention they require.
Each time one of these children was admitted for respite care, or a sick child was admitted for non-invasive terminal care, I knew a different environment was needed. So, when Anita died, and the language problem and cultural differences made comforting the parents even harder, I realised it was no good to just to keep thinking of what was wrong, but to get on and do something to improve the situation. So, I applied some thought as to what was needed and how it might be achieved,
The idea of a children’s hospice started to develop – a place where families could take refuge from the stress and anxieties that looking after a child with a life-limiting condition can engender.
After 16 years in the Queen Alexandra’s Royal Army Nursing Corps, I resigned my commission in 1984 and set up home in Essex. Whilst nursing as Matron-Manager of a private clinic near Cambridge. I also started evaluating the need for a children’s hospice in the area. I did a great deal of research, visiting the surrounding Health Authorities to explain my ideas. All the people I met said that they knew of children they could place in this sort of an establishment tomorrow, but how could such a thing be financed?
I approached my solicitor for advice on how to raise funds for such a project, and he gave me a hefty tome which listed all the charitable, grant-making trusts. He also said he would mention my ideas to the Granta Round Table, of which he was a member.
So, I set about writing my letters, but the replies I received were not forthcoming, and some people obviously felt I was some sort of crank. I started to feel despondent, and for some time did nothing more about the project. I concentrated on my new house, my job and my new boxer puppy.
And then, I got a telephone call from Barry Coupe. I had never heard of him before, but he had learned of my plans for a hospice from my solicitor. Barry was to become Chair of the local Round Table and was interested in making the hospice the cause of his fundraising during his year of office.
A secretary to another member of the Round Table lived in Milton. Knowing that the old rectory had been empty for two years she suggested it might be an ideal site for the hospice. The Rector of Milton – Fred Kilner – and the GP Dr Draper, had previously thought that the Rectory might be suitable for an old people’s home; now they thought about the other end of the scale.
This then, was how the seed was sown for the children’s hospice, but it was brought to life by others and has been growing ever since. It is the story of many people, all playing a part in the overall plan, but most important are those children and families who unknowingly initiated the idea through their sadness.
Speaking ahead of the 30th anniversary, Sue said:
“I follow the children’s hospice movement with great interest and send my sincere best wishes to all those involved in all ways. Most particularly to the children and their families. Their strength and fortitude in such sadness is inspirational and unforgettable.”