Ventilator-Assisted Living©

Spring 1996, Vol. 10, No. 1


On Holiday at Netley Waterside House

Anne Isberg

The Kevin Black Centre at Netley Waterside House is in Southampton, on Southampton Water. The building itself is 20 years old, and four large flats have been prepared for people with severe disabilities, especially ventilator users with extensive respiratory equipment. The brainchild of Dr. Geoffrey Spencer, OBE, who recently retired as head of the Lane-Fox Unit at St. Thomas' Hospital in London, The Centre is operated by REFRESH (Resort For Responaut's Seaside Holiday), a registered charity which subsidizes the cost and plans activities. The cost is about $1,000–2,500 USD per week depending on one's financial situation; REFRESH does subsidize some of the cost.

The Centre is an essential link in the care chain of hospital, convalescence, home care, and respite care for ventilator users and their families in the United Kingdom and Europe. Its close connection with Lane-Fox enables it to borrow equipment at three hours notice. Because many of the guests are physically disabled, they have access to the use of a POSSUM unit, a computer which switches facilities on and off, so the telephone, television, radio, and other devices can be operated independently.

I had learned of The Centre during previous visits to London, and at this stage of my life, I wanted to try to be entirely on my own. REFRESH agreed to accommodate me for two weeks in the Fall of 1995, after my needs (as a respiratory polio survivor and ventilator user) were evaluated and after recommendations from my physician. The drive from London took approximately two hours, and 1 was delivered and then abandoned as I wished to be.

The REFRESH staff consists of nurses, trained caregivers, and domestic personnel. Mrs. Cecilia Connolly, formerly with Lane-Fox, is operations manager. The staff is experienced, motivated, and willing to fulfill each guest's individual needs. Many had worked at Netley for several years. The general attitude was very kind and friendly. Several of the Trustees from REFRESH came to The Centre while I was there. They took great interest in every concept for the place and made great effort keeping the place running according to the guests' satisfaction.

My flat was one of the smaller ones but still well above 50 square meters. It had a bathroom big enough for a wheelchair, and a ceiling hoist that went from my wheelchair to the bed to the tub and ended over the lavatory. There was a bed with a mattress according to my wishes with an electric headrest. In addition, there was a tea kettle, china, refrigerator, television, telephone, intercom, alarm, POSSUM, couch, table, chairs, and plenty of extra space. There were double doors out to the garden that were wide enough to wheel the bed through. My windows were facing the garden and the water, and I could watch the ship traffic to the busy Southampton Water.

I was served tea at around 8 a.m., then had breakfast in bed at nine or had my breakfast kept aside. Most days I was ready to face the world by 11 a.m. This could vary according to available staff. Several staff members were on sick leave when I was there, but because the remaining staff was overworked at times, the guests took turns getting up either earlier or later. On the whole, the staff was large and when I was being assisted in the morning, I had eight different people helping me. I had to be very alert all the time to remember everything. There never was any routine.

One can choose to stay in one's flat or to socialize. My days were spent reading and writing. I went for "walks" on my own wheels, shopping in the village of Netley. Many friends and acquaintances visited. I never found time to join any of the offered excursions in the afternoon, but I did manage a visit to the theatre in Southampton. I also joined the entertainment in the evenings.

Meals can be served in the flats or in the common facilities where staff is available to cut food or help feed people. I ate dinner in the dining room. Everything was served for me and, when needed, my food was cut for me. I usually went to bed at 9 p.m. so the evening staff could help me, and then watched television. The evening shift was larger than the night shift (only two persons on duty).

I made a few contacts with other guests, but it was the beautiful nature and garden with its flower beds and trees, not to mention all the birds, that I enjoyed the most. The paths in the garden were paved and a small platform was constructed close to the water.

After almost two weeks, I left. It was nice to return to my daily routine, but with new inspirations and "charged" for the oncoming winter. In the future, I plan to use Netley as a backup for care, if I would suddenly get a vital shortage of attendants or if I am temporarily down. For Americans where it so often is a spouse that is providing the attendant care, I think it would be ideal either for them to enjoy a relaxed time together or where the partner who is disabled could stay while the spouse enjoys a break.

Editor's Note: For complete information about holidays at The Kevin Black Centre, write Netley Waterside House, Victoria Rd., Netley Abbey, Southampton S03 5FA England.

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