Personal views: Facing the challenges of long term care
Authors: Ruth Windsor
Journal: BMJ (2000)

I grew up in the United States thinking that Britain was the most caring country in the world because the NHS provided free health care to everyone regardless of race, creed, age, or financial circumstances. I worked in the finest hospitals in the United States for almost 20 years, and the inequality of care provided for the “have nots” was distressing.


I married the Englishman who encouraged the NHS to deliver services more effectively by using information systems. In 1991 he developed a rare disease that took eight months to diagnose and was physically and mentally debilitating. Since then I have witnessed an appalling lack of accountability and waste of resources. 


People need to know where to obtain the right information—at the right time



Professionals opened sterile trays to obtain a single lumbar puncture needle or sterile dressing. Patients received meals that resulted in surgery being postponed. Patients were admitted to hospital for tests and treatments that could have been performed in the outpatient department.

Rather than promote accountability and reward efficient use of resources to cut costs, the administration was increasing the workload of professional care providers without increasing their support or income. Behind closed doors with no witnesses, two consultants and a physiotherapist have told me on separate occasions that they could no longer spend their budget on my husband's care because others could achieve greater benefit from their limited resources.

While primary care providers have intimate awareness of our needs, they may be unaware of services that local authorities, healthcare trusts, and independent and voluntary organisations provide to enable people to remain in their homes. A social services care manager delighted us with handrails; adaptations to furniture; and incontinence, shopping, and home help services that she arranged to keep my husband at home.

Challenges with home help services provided by private agencies were overwhelming at times. Training new carers included how to help a person with severe physical disabilities get up and down the stairs; how to push the wheelchair over kerbs; and how to manage double incontinence.

We were unaware of local and health authorities' procedures when they transferred my husband from hospital in 1996 to a jointly funded nursing home placement. A two month placement extended to 18 months with no response to my calls or correspondence. I unexpectedly received an invoice from social services for almost £36 000. Four months later, they acknowledged they were seeking only to recover local authority funding and sent a revised invoice for £17 500.

Research unearthed little known policies and procedures, including eligibility criteria for NHS continuing care; hospital discharge procedures; social services priorities; charging policies; and the responsibilities of local and health authorities to perform assessments and to provide information about their services. Some care managers are unaware that these procedures exist.

Consultation papers to review the social services complaints procedures are being reviewed independently of the NHS complaint procedures, although primary care groups and joint funding represent “joined up government.” One hospital discharge leaves us facing three, and possibly four, separate complaints procedures four years after the event.

Continuously changing eligibility criteria and unknown procedures and policies leave vulnerable people and their carers even more vulnerable. People who have relied on health and local authority support for more than 40 years suffer from indeterminate health and social care policy transitions.

Perhaps the government should consider encouraging people who are just beginning to earn a living to take out private insurance, rather than people who have relied on public service provision for years.

The quality of NHS care has been truly exceptional and I hold care providers in the highest esteem. The government has the opportunity to continue and enhance the comprehensive and caring service of the NHS. Rewarding best practice in effective and efficient service delivery can improve NHS staff morale and reduce cost. Developing identical complaints procedures for the NHS and social services, both within the Department of Health, can enhance working across departmental boundaries. Encouraging and facilitating communication across professional boundaries can support “joined up government.” By proactively marketing the results of service user consultations in the community, vulnerable people will be helped to know which way to turn when they need support or help.

We have founded a charity, Caring Matters, to empower and inform people facing the challenges and complexities of long term care and to help them to become aware of their rights and responsibilities. People need to know where to obtain the right information—at the right time.