Care Home Concerns: The Fight for Rights

Speech by Paul Burstow MP

Relatives and Residents Association Conference

INTRODUCTION

First I want to say how honoured I am to have been invited to become one of your Patrons.

I certainly look forward to working with Judy and Gillian over the coming months on our shared concerns.

The agenda says that I am going to speak about care home concerns. There are plenty to choose from.

But I would like to subtitle my remarks: THE FIGHT FOR RIGHTS.

Gillian has already outlined some of the messages that come through from the services the association provides.

Those case studies put a human face on what it means to have human rights denied.

When I last spoke at your conference two years ago I took as my theme institutional ageism. I argued then and I maintain now that the Department of Health is ageist in both policy and practice.

Institutional ageism that not only tolerates lower standards in care homes for the elderly compared to those for children but actually sets those standards.

I pointed to the marked differences in public attitudes, care standards and public funding for services for older people and children.

I concluded that the challenge for policy-makers committed to improving the quality of life of older people was to confront the ageist mindset.

HOW DO WE CHALLENGE AGEISM?

So how can we meet the challenge?

What are the policy levers that could help us?

I think we have to learn from the disability movement.

By developing a rights based agenda for older people.

That is where the Human Rights Act should come in.

The Act asserts the equal dignity and worth of each and every one of us.

But does everyone enjoy equal access to the protection of the Human Rights Act?

No.

Thanks to a court decision about the interpretation of the Act when you cross the threshold of a privately run care home you enter the twilight zone.

A twilight zone where an 'out of sight, out of mind' culture of abuse can become accepted as the norm.

Care homes are places where human rights can lawfully be denied.

When older people are neglected or mistreated in a care home, when medication is used as a chemical straitjacket, when relatives are told they can't visit because they ask awkward questions, when a married couple are separated and sent to different care homes against their wishes, when an older person is evicted from a care home it is rarely seen as a human rights issue.

Often it is seen as a case of poor practice or poor standards.

Yes of course standards matter.

But these are violations of a person's human rights.

The right to have one's life protected by law.

The right to be free from inhuman or degrading treatment.

The right not to be deprived of one's liberty.

The right to respect for one's privacy and family life.

The right to marry.

These are just five of the fourteen articles.

Twice yearly inspections by the Commission for Social Care Inspection are not the answer to violations of older people's rights and dignity.

And with plans for an even lighter touch inspection regime in the future the protection of human rights will not be delivered by inspection.

Cross the threshold of a private care home and the Human Rights Act does not apply.

A person receiving services from a private body does not benefit from the protection of the Human Rights Act.

That is what the Courts have decided.

Such a restrictive interpretation of the Act is not what Parliament wanted.

Yet the consequences are far reaching.

As many as 9 out of 10 care homes are operated by private organisations.

Two thirds of people living in those homes are paid for by local Councils.

Despite the source of the funds being a public authority the Human Rights Act does not apply. Privately run care homes are not public authorities.

And if you are a self-funder your rights are even more at risk. You don't even have the possibility of a vigilant local authority using its contracting muscle to safeguard your dignity and welfare.

The Parliamentary Human Rights Committee concluded two years ago that the Courts should be interpreting the Human Rights Act more widely.

But two years on little has changed.

The Government has not stepped in to put matters straight.

It has not sought to amend the Act.

It has not encouraged local authorities to use their contracting with private care providers to ensure compliance with the Act.

It has not changed the regulations governing inspection and regulation to make compliance a condition of registration for all providers of care services.

I raised this issue through Parliamentary Questions to the then Health Minister Jacqui Smith in 2003.

Her answer was true, but evasive.

She said that

"As caselaw makes clear, in exercising its duties in respect of a person, the local authority remains accountable under the Human Rights Act 1998."

True, but meaningless in practice.

I followed this up by asking her if she would make it a requirement of Council contracting that residents would be fully protected under the Human Rights Act.

In short the answer was NO.

Extending and enforcing the Human Rights Act to protect older people could change profoundly the status of such services.

Enforceable rights would be a powerful lever for change in long term residential care.

By 2007 there will be a new Commission for Equality and Human Rights with the duty and powers to promote human rights and undertake investigations.

I hope that the new Commission will turn the spotlight on these issues.

But before the Commission starts its work it's up to us to campaign for the law to be changed so that privately provided services are not exempt from the Human Rights Act.

The need for this is clear.

But the Government's zeal for a mixed-economy of providers in healthcare to run alongside the mixed-economy of providers in personal and social care makes that need an all the more pressing one.

TACKLING ABUSE: MEDICATION

I would like to take a quick straw poll.

How many of you have heard of Victoria Climbie?

How many of you have heard of Margaret Panting?

Both where victims of horrendous physical abuse, degradation and torture.

Victoria's tragic death convulsed the child protection system, resulted in two criminal prosecutions, led to the Laming Inquiry, to the Every Child Matters policy and the Children Act.

Margaret Panting's tragic death did not even result in anyone being charged for the 49 injuries on her body including razor blade cuts and cigarette burns.

The difference between Victoria and Margaret was 70 years.

When I addressed this Conference in 2003 I spoke about elder abuse being a taboo.

Since then we've had a major inquiry by the Commons Heath Committee.

I think that the inquiry and the Committee's report has given renewed impetus in Government to address the issue.

Even Comic Relief highlighted elder abuse last year.

But there are still reasons to be concerned.

I still do not believe that enough is being done to stamp out the inappropriate use of medication in care homes.

Chemical restraint is elder abuse.

According to the Commission for Social Care Inspection over 5,700 of the 13,000 care homes in England either did not meet or almost met the national minimum standard for medication.

This is an improvement on the previous year.

But try telling that to the residents living in one of the sub-standard homes.

More worrying still in a report on medication the Commission say:

"The majority of prescribed medicines will be supplied by a GP on a repeat basis at the request of care staff and not the service user."

This places care staff in a powerful position influencing prescribing for good or for ill.

This is why I believe regular medicine review is so vital.

But international evidence suggests that annual reviews of prescription for elderly people, as proposed in the Older People's National Service Framework, are inadequate, harm can be done in far less than a year.

But the new GP contract does not provide the necessary incentives for more frequent reviews.

Among the indicators in the contract, there are two that specifically incentivise regular review of medication.

They are:

"A medication review is recorded in the notes in the preceding 15 months for all patients being prescribed four or more repeat medicines (worth seven points)";

and

"A medication review is recorded in the notes in the preceding 15 months for all patients being prescribed repeat medicines (worth eight points)."

In the Government's response to the Select Committee report on Elder Abuse it says 15 months, yet the NSF talks about 12 months for people on fewer than four medications and six months for people on more than four medications.

Am I the only one who thinks we have a problem here?

Every time I have raised this with Ministers I have been left with the distinct feeling that the NSF medicine review standard has been quietly dropped.

An evaluation of the implementation of guidance on medication reviews published by the Department of Health earlier this year found that just 8% of Primary Care Trusts had met the NSF standard of annual medication reviews for patients aged over 75. Worse still just 5% had met the target for six monthly reviews for patients over 75 on four or more medicines.

The evaluation was conducted in January 2004 and published in March 2005. Why did it take so long to publish the findings?

The NSF milestone for medicine reviews was 2002.

Even in 2004 47% of PCTs were reporting that they would not be able to conduct six monthly medicine reviews for over 75s on four or more medicines.

Delve a little deeper into the evaluation and you find that even those PCTs who say they are doing medication reviews not every GP practice is undertaking them.

Ministers have failed to join the dots between a rise in the prescribing of antipsychotic drugs, the rise in adverse drug reaction (ADR) reports involving antipsychotics, and the worrying 35% increase in the number of non-fatal ADRs amongst those over 75, and the alarming 83% increase in fatal ADR amongst those over 75.

A study in the British Medical Journal last year found that patients admitted to hospital with ADRs were significantly older than patients admitted for other reasons.

The study concluded that the NSF needed to be implemented.

Yes, the NSF medicines standards should be implemented. That would be a step in the right direction.

More frequent reviews would help to safeguard the health and welfare of older people.

Another study in the British Medical Journal in 2003 concluded that older people in care homes received poorer medical care than those living at home in terms of overuse of inappropriate or unnecessary drugs, poor monitoring of chronic disease and under use of beneficial drugs.

TACKLING ABUSE: NO SECRETS

Inappropriate medication is only one form of abuse.

The Government's approach to elder abuse was to issue the No Secrets guidance in 2000. This provides a framework for developing multi-agency codes of practice.

While its implementation is essential if elder abuse is to be detected and tackled it is not sufficient to address the underlying causes and so prevent abuse.

In its evidence to the Select Committee the Department of Health refers to the work undertaken by the Centre for Policy on Ageing to analyse the codes of practice produced in response to the No Secrets Guidance.

The evidence stated:

"The analysis indicates that by and large local councils have met the requirements required by 'No Secrets' and that considerable progress has been made towards improving co-ordination between agencies when dealing with adult abuse cases."

Progress has been made. Codes of practice have been produced.

But Codes of Practice do not have an impact on practice on their own. It requires leadership, a change in attitude and a change in culture.

The study looked at what the Codes of Practice actually said. So for example the study found 61% did not have a designated lead officer responsible for delivering "No Secrets".

Perhaps more worrying still 79% made no reference to having an adult protection training plan in place.

For No Secrets to work people have to know about it. Yet the study found that 86% of codes made no reference to production of information for the public.

Detecting and reporting abuse is important. But so too is prevention. Yet 91% of the codes failed to identify any service development priorities around prevention.

The role of contracts staff had largely been overlooked. There was little or no sign that there was any intention of reviewing purchasing agreements and service specifications to ensure compliance with the framework provided by the local code of practice. The study found that 61% of codes made no reference to this.

Yet with so much hands-on care provided by the private and voluntary sectors the contractual and performance monitoring arrangements must be grounded those local codes of practice.

Over all the analysis found that over a quarter of all local authorities - 40 plus Councils - had made very little progress across a broad range of areas key to translating 'No Secrets' into practice.

I really cannot see how the Department could have said that 'considerable progress had been made'.

The only word to describe the Department's conclusion is complacent.

The Select Committee recommended that there should be a joint inspection of adult protection just as there is a joint inspection of the arrangements for safeguarding children.

Since then Commission for Social Care Inspection has included some questions about adult protection in the Delivery and Improvement Statement which Council's have to submit annually.

I am awaiting the answers to Parliamentary Questions to see how much this really tells us about progress.

REGULATION

I said earlier that standards matter. And they do.

Fair and consistently applied regulation has an important part to play in maintaining standards.

But regulation of the care sector has been in constant flux ever since the Care Standards Act 2000.

Then the aim was a national regulator of national minimum care standards starting with care homes and over time extending to other care settings.

The National Care Standards Commission went live on 1st April 2002 only to learn of its demise, care of Alan Milburn after little more than a fortnight.

Hardly a good beginning for national regulation and inspection.

No time to assemble and assimilate the 250 local authority and NHS inspection units into a functional entity. No time to develop the staff and create a regulator capable of doing the job.

The successor to the Care Standards Commission, the Commission for Social Care Inspection, has faired little better.

It started in April 2004 and had a little over a year before the Chancellor announced its demise in the Budget statement in March 2005.

An announcement out of the blue and in spite of the Department of Health's own arms length review appearing to rule out any further change.

When asked recently for the rationale behind this change Ministers response was that the details were being worked on as part of a "wider review of regulation in health and social care". The new commission will start in 2008.

The cost of replacing the Care Standards Commission with the Commission for Social Care Inspection has been put at £7.5 million by the Department of Health.

But the opportunity cost must be huge.

The time and energy that has to be devoted to reorganisation and the internal politics that go along with such upheavals is appalling.

Indeed if, as seems the case, Gordon Brown's Budget announcement was born out of some macho desire to pepper his remarks with anti red tape rhetoric it is a scandalous way to manage a system that is intended to help protect some of the most vulnerable people in our society.

When the Government's proposals for merging health and social care inspectorates are published they will require careful scrutiny.

And if the merger goes ahead making sure that the focus on standards is not lost will be essential.

For example, good staff make a difference to the life of the people they care for. The attitude of staff to residents can be hugely important to the degree of freedom and choice residents enjoy.

A care home becomes abusive to its residents when the convenience of the staff is a greater priority than the dignity and well being of the people in their care.

Just as care home residents can become institutionalised so too can the staff, accepting poor standards and tolerating bad practice. Low levels of training and high staff turnover are a breeding ground for neglect and abuse.

So training is crucial.

The 2005 deadline for achieving the national minimum standard of 50% of care home staff holding a national vocational qualification level 2 is an important milestone against which progress in the sector can be judged.

I was disturbed to learn in an answer to a recent Parliamentary question that the Commission for Social Care Inspection has given homes until the very last day of 2005 31st December 2005.

In effect compliance with the standard has been allowed to slip a whole year.

One final point on standards.

According to research published by the European Nutrition Alliance earlier this year the prevalence of malnutrition in nursing homes is 60-100%.

A shocking statistic.

And if correct it calls into question the way in which inspections work.

According to an answer to a recent written parliamentary question just over 4 per cent of complaints to Commission for Social Care Inspections concerned food.

Currently there are no nutrition requirements laid down in national minimum standards for care homes, just a general statement that people should receive a "wholesome appealing balanced diet".

Sounds a bit like motherhood and apple pie.

At long last the case for nutrient base standards has been accepted for school meals.

I think we need Jamie Oliver to do to our care homes what he has done for our schools.

OFT REPORT

When I last spoke at your conference in 2003 the issue of Care Home closures was at its height.

The sector having expanded in an unplanned way in the 1980s was contracting in just the same way.

Market forces were left to find a new equilibrium in the sector.

The victims of that market adjustment were care home residents and their families.

The loss of care home places has meant less local choice and more out of area placements.

Care home fees remain an issue and Ministers remain in denial.

The intervention of the Office of Fair Trading following a super complaint by Which? offered the prospect of a fresh look at some of the issues.

The OFT published the results of its 10-month investigation in May of this year.

It concluded that 1 in 4 residents in care homes faced "fee related terms that were unfair or unclear."

The Department of Health responded to the reports recommendations in August. Its response has rightly been described by Which? as vague and short on detail

The response and that from the Commission for Social Care Inspection make interesting reading. But both are full of promises of action tomorrow rather than action today.

There are two issues I want to highlight.

Both relate to the Choice of Accommodation Directions.

The first concerns the recommendation that self-funded older people with assessed need should have access to the same advice, guidance and assistance on choice as older people receiving public funding.

The Department's response acknowledges that existing legislation and guidance is not being applied consistently. But then goes on to state that providing self-funders with the same support as local authority funded residents "would represent a significant expansion of the statutory role of social services."

The Commission is much more direct in supporting the OFT's conclusion that local authorities should take seriously their responsibilities to offer advice and information regardless of a persons financial circumstances.

I welcome the fact that the Commission is reviewing its inspection methodology to learn more about people's experience immediately before they enter residential care.

It makes no sense for a self-funder to admit themselves to a particular home because social services have been unwilling to engage with them and offer the support and advice they need to make an informed choice about how and where they live.

But it is worrying that the Government is unwilling to back recommendations to level the playing field on protection and support.

The second issue concerns top-up or third party payments.

The OFT recommended that local authorities should be responsible for contracting and paying for the full costs of accommodation, including any top-up fees.

The Choice of Accommodation Directions make it clear that Councils are responsible for meeting the full costs of accommodation to meet assessed needs, including top-up fees

Council's cannot arbitrarily cap the amount they will pay in fees. Yet in practice that is precisely what many Councils do. The clear impression is given that a maximum fee level applies.

The test remains one of assessed need and the appropriateness of the home placement.

As the gap between care home fees and what councils are willing to pay widens more and more families are forced to choose between eviction or topping up the care home fees.

Clear contracts that spell out the details of fees payable and by whom should help but this requires enforcement action by the Commission to make a real difference.

This issue is not a new one. The Department of Health has consistently failed to take concrete steps to stop local authorities from misapplying the law.

It seems that the only certainty older people and their families face when it comes to accessing residential care is that it will be confusing, daunting and unfair.

What is clear both from the OFT report and other enquiries is that the sector remains under funded.

WANLESS

The resources question is long overdue for detailed examination.

The decision to boost health spending after the 2001 General Election was given credibility by Derek Wanless's report for the Treasury, Securing Our Future Health. It made a powerful case for increased investment.

But Wanless was only asked to look at healthcare spending. Reading his report it is clear that he soon realised just how interconnected health and social care are. The report is full of references to social care and the need for a similar examination. Sadly despite repeated requests no such exercise has been commissioned.

Despite the Government's reluctance to commission a Wanless review of social care the Kings Fund has stepped in asked Sir Derek to lead a review.

The review is expected next spring.

It may finally give those of us who long argued the case for investment in social care the evidence we need to win the argument.

With further announcements about the future of social care expected in the next few months as part of a White Paper the Kings Fund's initiative is timely.

We will see.

CONCLUSIONS

So there are plenty of care home concerns.

I have just listed a few today.

The need to develop a rights based agenda for older people is pressing.

As a Patron I look forward to working with you over the coming months to highlight your work and together to fight for the human rights for some of the most vulnerable older people in this country.

Thank you.