30 years of East Anglia’s Children’s Hospices in Milton

This week East Anglia’s Children’s Hospices celebrated the 30th anniversary of its hospice in Milton.

It was on 1 August, 1989, that Diana, Princess of Wales, opened what was at the time only one of four children’s hospices in the world. Today there are 54.

EACH in its current form was established in 1998, when the hospice in Milton merged with one in Quidenham, Norfolk, that had opened in 1991.

Both realised it would be easier to achieve their objectives as one and coming together then meant EACH had, probably, amassed more experience in children’s palliative care than any other organisation in the world.

Indeed, EACH has an industry reputation for excellence and pioneering development, and has had a big hand in developing hospices as far afield as Australia.

Among various additions to EACH Milton over the years has been an education centre, opened by HRH The Princess Royal in June 2003. It houses a library often used by children’s palliative care professionals from across the country.

When it comes to care for some of the most vulnerable children in Cambridgeshire and West Essex, and support for their families, we aim to meet the individual needs of all. The hospice is not just about end of life care; it is often a very happy and fun place where young people can live life to their full potential.

It came as a pleasant surprise to EACH to welcome aboard HRH The Duchess of Cambridge as Royal Patron after she paid a private visit to Milton in November 2011, seeing for herself exactly what we do and how much difference we make to families going through the toughest period of their lives.

EACH currently offer care to 125 children and young people across Cambridgeshire and West Essex, and wellbeing support to 96 of their family members. Overall, with its hospice in Norfolk and another in Suffolk, the charity supports around 450 families at any one time.

They need to raise £5,600 a day to run the hospice in Milton and overall EACH needs to raise £6.4 million from fundraising. Coming up there are open air screenings of Bohemian Rhapsody at Ely Cathedral, Huntingdon Racecourse and Audley End on August 31, September 7 and September 21 respectively.

The is also reliant on volunteers, with some 1,500 helping us at its hospices and offices, in its shops, and at fundraising events.

EACH would like to say a big thank you to anyone and everyone who has ever supported them, whether by raising money, donating items to one of its shops or by volunteering,

Sue Potter’s Story – how the children’s hospice at Milton 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.

A message from Sue on Milton’s 30th anniversary:

“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.”

For more information about EACH visit each.org.uk.

Read more:

East Anglia’s Children’s Hospices hope for dress success with Claire

Giving some light to families as they face the darkest of times

Duchess praises work of charity that aims to help Cambridgeshire families

‘I never expected that Jacob had just months to live’