Feature

You’ve got to fight for the right to care

A campaign has been launched to urge the government to provide free personal and nursing care to all those who need it. Paul Evans and Helen Findlay report

My husband Malcolm was the kindest, gentlest man you could have ever met. Then, 10 years ago, at the age of 51, he was diagnosed as having Alzheimer’s disease. Now he can’t do anything for himself. He needs two people to see to all his needs, including me. The health authority judged that the 24-hour care we give him is not nursing care but personal care, so it will not provide any help.’

This was the poignant story relayed by Barbara Pointon at the launch of the Right To Care campaign and charter last November. The campaign involves a broad-based grouping of 20 influential national organisations, which are lobbying for the full implementation of the findings of the Royal Commission on Long-term Care – which includes the recommendation that all nursing and personal care should be free at the point of use for all who need it.

Among the patrons of the campaign are Claire Rayner, who is president of the Patients’ Association and was a member of the Royal Commission, Robin Wendt, a member of the Social Security Advisory Committee and also of the commission, and Lord Sutherland, who chaired the commission.

The Right To Care charter was signed by representatives of all 20 organisations, plus MPs David Hinchliffe and Paul Burstow. It states: ‘It is unacceptable to charge older or disabled people for essential personal care – means testing of personal care should be ended; the artificial distinction between ‘nursing’ and ‘personal’ care should be removed; good quality personal and nursing care should be provided on the basis of need, free at the point of use in all settings.’

This position had a massive boost following a MORI poll commissioned by Unison, which found that 75 per cent of adults believed the government should provide free personal care for all elderly people who need it.

‘Your time will come,’ Claire Rayner told members of the audience at the launch. ‘I was very happy at the end of 1997 when the Royal Commission on Long-term Care was set up. I thought: “At last we will end this cruel approach to care of our elderly and vulnerable.” However, the elderly are still being treated appallingly. We spend less of our gross domestic product on elderly care than does anyone else. All we need is to spend 0.1 per cent for it to be enough.’

On January 25, Scotland announced that personal care would be provided free and, despite a recent refusal of help from the Treasury, the first minister confirmed that the Scottish Parliament’s decision would be honoured. In Northern Ireland, a committee has been set up to look at the possibility of following Scotland’s lead.

Meanwhile, in England and Wales the implementation of free nursing care has been criticised for not being adequately funded. Patients requiring a high level of traditional-style nursing report that their funding does not meet their nursing fees. Under the system, a patient’s nursing needs are assessed and placed into one of three bands, setting the level of funding from the NHS to the nursing home: this can be £35, £70 or £110 a week.

Only about 10 per cent of people are expected to qualify for the £110 band, with the majority falling in the £70 band; some could see as little as £35. Most people will still have to pay in excess of £300 a week for accommodation and personal care.

The definition of ‘nursing care’ is narrow. It covers the time of a registered nurse only, not that of health care assistants/nursing students to carry out tasks supervised by an RGN. The majority of care for patients needing constant nursing tends to be performed by HCAs whose time will be counted as personal care and so charged for.

The NHS Support Federation believes a joint campaign brings a far greater chance of success, so it is committed to building an effective coalition. Campaign events have been planned to involve the public, as well as politicians and the media.

A parliamentary reception will launch a collection of case studies to demonstrate the impact on patients of the current inadequate provision. In advance of the Budget, briefings will be sent to the media to point out public support for taxes being spent on free personal and nursing care, and to highlight that the cost would be relatively small – 0.1 per cent of GDP.

Public meetings are planned across the country to stimulate local debate and will be attended by Ms Rayner, for the Right to Care campaign. The coalition of 20 organisation includes trade unions and charities, all of which will be using their networks to raise public involvement to press for changes in long-term care provision.

‘We believe it is unacceptable to charge older or disabled people for essential personal care, such as help with going to the toilet,’ said Unison deputy general secretary Keith Sonnet. ‘We want to see an end to the dreaded means testing, which is degrading and humiliating. It penalises older people with savings or assets, such as the home they own, and younger disabled people with an income’.

For more information, visit www.righttocare.org.uk or www.unison.org.uk/righttocare/index.asp, or contact the NHS Support Federation: tel 0207 633 0801, email paul@nhscampaign.org.