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Health: Terminally Ill Patients

Volume 701: debated on Thursday 1 May 2008

asked Her Majesty’s Government:

Whether they are considering direct payments to meet combined health and social needs for terminally ill patients and their carers.

My Lords, the introduction of individual budgets in social care has transformed the care of some social care users. Learning from this, we need to understand how to support and allow health service users to design their own tailored care and support packages. The NHS Next Stage review will consider this issue and will report in the summer.

My Lords, I thank the Minister for her reply. Do the Government recognise that speed and flexibility are of the essence for these patients, yet delays after care assessments exist? If patients could directly arrange adaptations, such as fitting a stair rail or for care from a Marie Curie night nurse, their care would fit with the Government’s aim of putting people first, which would free district nurses from a gatekeeper function. Do the Government recognise the anomaly that, when patients receiving direct payments for social care deteriorate and become eligible for continuing care, their direct payments cease, thereby removing the ability to control their care at the end of life?

My Lords, I am pleased to acknowledge the issues raised by the noble Baroness concerning the problems faced by the terminally ill in often needing small amounts of money quickly and the issue that is created by direct payments and transfers to continuing care. Early findings from the pilots show that the introduction of individual budgets and direct payments in social care have transformed the care of some social care users. We need to learn how to support and allow service users increasingly to design their own packages. The Next Stage review is looking at different ways in which patients can be given greater control over their healthcare. This might include an offer of an individual budget that gives people with particular long-term conditions more control over their treatment. That work is at an early stage, but care for the terminally ill is a potential area to look at. I would particularly welcome the views of the noble Baroness on how that might best be achieved, in the window that those two factors provide us with, in the coming period.

My Lords, I welcome the Minister’s concerned response; things are clearly going on in this field. Can she tell us what the Government are doing to encourage people to record their preferences for end-of-life care in advance of becoming terminally ill?

My Lords, I should have guessed that the noble Baroness might ask a question that was not covered in my brief. I will have to get back to her about this. I know that that activity is taking place; we are developing the country’s first national end-of-life care strategy for adults, the delivery of which is about increased choice for all adult patients to cover all conditions and care given in all settings—home, hospital, care home and hospice—as well as care given in the last years of life, patients, carers and families. Part of that process will be about finding out people’s preferences.

My Lords, the noble Baroness may know that a national survey of direct payments published last year revealed that mental health service users have the greatest difficulty of all users in accessing direct payments, and that the statutory requirement to offer direct payments to this group has made no substantial difference to the level of provision. Will the Next Stage review look at ways of improving access to direct payments for that group of patients?

My Lords, the Government’s aim is to give people with particular long-term conditions control over their treatment, as I have said. Access to direct payments should be available to all people eligible to receive them. Indeed, as the noble Earl may well be aware, there is a proposal under the Health and Social Care Bill to extend direct payments provisions to people who have those sorts of difficulties and disabilities.

My Lords, I turn to the part of the Question referring to carers. Some people have had long-term carers. It is claimed the great majority of the terminally ill would like to die at home. At the very end, they do not necessarily need a great deal of intensive nursing, but their carers are terribly important to them. Would not direct payments help to ensure continuity with these same carers?

My Lords, the noble Baroness is absolutely correct, and we are addressing that issue in the Next Stage review.

My Lords, accepting that the prediction of prognosis is difficult, does the Minister agree that the DS1500 fast-track for attendance allowance should be instigated early enough for patients to get the care that they feel they need?

My Lords, the noble Lord is correct. This is an important payment, and it is important that it is easily and quickly accessible and made available as needed by the terminally ill.