Talk:Jill Pitkeathley, Baroness Pitkeathley

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A thought-provoking speech about Britain's pathway to three separate Acts of Parliament for carers, delivered by the Baroness at our recent Caring for the Carers Summit in Wellington.

Good morning. It is a great privilege to be here, and thanks to Carers New Zealand for asking me. It is wonderful to be reacquainted with those of you I have already met at carer conferences throughout the world, and of course those of you I met during my last visit to New Zealand 18 months ago.

It is very evident - and daily growing more so - that what is being established is a global carer movement. However different the sitations of carer organisations across the globe, however different the policy contexts in which we are all working, the issues which unite us - the mission to get carers recognised and supported - are common. This means we can learn from each other, profit from one another's successes and, just as importantly, learn from each other's mistakes.

If the carers movement in the UK has had any success (and as I must always emphasise, there are many UK carers who would dispute that) it is principally about what I always refer to as turning a private trouble into a public issue ... about raising public awareness of what was until comparatively recently a private matter ... so that legislators and policymakers simply cannot ignore it. That is what I want to talk to you about today.

I shall talk too about the legislative changes we have brought about in the UK, partly because they may be relevant to your situation in New Zealand, but also as a means of illustrating how progress has been made. I shall also talk about the lessons which have been learned, in the hope that they too may be relevant.

As it is now six years since I stopped being CEO of Carers UK, I want to start by giving you my credentials for being in this slot at all.

First of course as you all will know, the carers cause is not something you can put down once you have picked it up. My commitment and passion for the cause remains as strong as it ever was, and Carers UK have done me the honour of asking me to be a vice president.

Second, I have what I think must be a unique experience as far as legislation for carers is concerned. There are now three separate acts of Parliament for carers on the statute book in the United Kingdom:

The Carers Recognition and Services Act 1995

The Carers and Disabled Children's Act 2000

And just last year, the Carers (Equal Opportunities Act) which comes into force this April.

For the first I was the head of the lobby group promoting the Bill. For the second and third, I was the Parliamentarian taking the Bill through the Upper House, being supported by the government machine and also by Carers UK.

I am of course also aware in speaking to this audience that lawmaking has different processes and procedures in different countries. I cannot attempt to set out a path for others to follow or even to give too much detaila bout each separate Act, but each one brought its own lessons, which have been useful for other carer movements and I hope that may also be the case here.

People have often asked me, why separate Acts of Parliament? Why not incorporate legislation for carers into other, more broadly based health, social care, or social security legislation? In my view you should not do one or the other, you should do both. Carers should certainly be recognised in every appropriate bit of legislation but there is something special about a piece of law concerned specifically with carers. It may be more symbolic than actual, but to have a Carers Act of Parliament raises the issue ... raises the profile ... is reaffirming for carers ... and also offers pretty good fundraising opportunities.

But let us be clear. Acts of Parliament are not the only way in which you can turn this private trouble of caring with which we are all concerned into a public issue. There are many other ways of doing that, as you will know.

Media attention, changes in the way services are provided, changes to benefit and social security systems, and above all perhaps changes in the way carers themselves react, the empowering of carers themselves ... are just as important as any legislation.

But legislation and the policy changes which are brought about as a result of it provides us with markers, as it were - measurements of the importance of the carers issue on the political agenda - and that is how I use them in my presentation to you today.

I hope you will permit me a little nostalgia here in recalling the position of carers in the UK in 1986, which is when I first became involved, and then I will just pinpoint what in my view were the most important steps towards getting carers recognised as the public issue they are today.

Let me say very strongly that I would not want anyone here to assume that all the carers in the UK are well recognised and supported. They are not. One of the reasons that this carers business holds one in thrall is because I never fail to be astonished, angered, and fired up by the position in which carers find themselves. All I can say is that their position now is better on the whole than it was then, in spite of the harrowing stories one still hears from individual carers.

OK. In 1986 no one even knew the word carer. It was not in the dictionary and the word was commonly mistaken for 'career'. There was no single organisation with which carers could identify, no source of advice, no means of contacting other carers. Married women were even excluded from the paltry benefit which was available to single women and to men because it was deemed to be part of a married woman's duty to care for parents or spouse.

Decisions and events which helped us move on from that situation include:

Media Attention

When I went to head up Carers UK I took a decision that no media opportunity should be missed. I quickly became known as the media Martini girl ... Any Time, Any Place, Any Where. Moreover I would always find a carer to do the media with me, or who would be filmed, to be sure that it was the image of a carer caring ... and not of me as a talking head ... which lingered in peoples' minds.

We extended this also to accepting any speaking engagement which was offered, and some which weren't (e.g. always asking a question about carers at any conference I attended). This may have been what got me invited onto the advisory group for an important government enquiry into community care. Not surprisingly, perhaps, this Review - enormously influential when published - stated for the first time that carers were the most important providers of community care.

Statistics

At about the same time (1988) the results from a Census were published in which for the first time a question had been asked about caring responsibilities. The results surprised everyone for they showed that there were about six million carers in the UK, about one in seven of the population. Moreover, we did some rough figures about how much carers saved the nation and came up with 34 billion pounds (around NZ$100 million). Updated figures show this is now about 57 pounds a year, or more than NZ$150 million.

These were wonderful statistics for sound bites and we used them shamelessly to build up the public profile.

This in turn led to greatly increased income base for the organisation - from government sources, trust funds, and also from the commercial sector. Seeing our public and political influence grow, lots of people were willing to give us money. This enabled the organisation to grow rapidly in size.

When I joined I was the fourth member of staff. By the early 1990s the organisation employed more than 60 people. So we had a bigger, more powerful Association working in close cooperation with other organisations. And I'll say more about that in a minute.

Let's focus then on the situation in the early 90s, about 10 years ago.

Carers UK, previously Carers National Association, has always defined itself as a campaigning body and has always firmly resisted any temptation to become a service provider for carers. This was part of the decision-making done by our organisation in the early days - that we would not compromise our campaigning role by becoming tied to the provision of services such as respite care.

The one exception was of course the provision of information for carers, which very much included the gathering of information from and about carers, their situation, their needs and so on ... and using this information as a campaigning or lobbying tool.

At that time it became apparent from our contact with carers (and also from research commissioned by the Association itself) that carers were not getting assessments of their needs under the existing community care legislation even though the local authorities and health services doing assessments of community care need were encouraged (though not compelled to do so).

We had already had some success in getting into the existing legislation some rights for carers to ask for an assessment of the person they cared for, but carers wanted their own assessment in recognition of the fact that they had needs distinct from and separate from the needs of the person receiving support. We were also aware that the carer movement itself needed some kind of boost - something to coalesce around - something innovative - a marketing tool, if you like.

There exists in the British Parliament a procedure called 'Private Members Bills'. Each year, after the Queen has opened the new session of Parliament, a ballot is held and any backbench MP may enter. The first seven to come up in the Ballot are guaranteed Parliamentary time and may promote any bill they wish. In reality these Bills will only become law if they can attract the support of the Government, but of course the MPs promoting the Bills are guaranteed a lot of air time in the media, especially if the Bill is promoting something which is either attractive or controversial.

This is the procedure we have now used successfully three separate times.

Of course, as soon as the names of the successful MPs are known, every lobby group in the country bombards them with their own pet Bills and a tense few days ensues before decisions are made.

We managed to persuade a Labour MP, Malcolm Wicks, to take up the Bill, the substance of which we wrote literally on the back of an envelope. At the time the Government was a conservative one, but Carers UK enjoyed good relationships with the powers that be. We knew the Ministers concerned, while Malcolm as an opposition person had never set foot inside the ministries nor had any contact with the personalities involved.

We then planned a huge publicity campaign to attract the attention of the media to the plight of carers and what we were trying to change for them, but also - most imporantly - to get carers themselves to contact their own members of Parliament to urge them to support the Bill. Malcolm too travelled widely, meeting carers and gaining their interest and support. We also worked hard to get the support of other charities and non-government organisations, as well as the statutory organisations providing health and social care. All this cost money, but we managed to secure the support of the Nat West Bank for all of our expenses.

Most vital though was the support of the individual members of Carers UK and of our colleagues in the Carers Alliance.

I cannot stress too strongly how vital the cohesiveness of the carer movement was at this time.

Carers UK had been the founder of what we called the Carers Alliance, a loose federation of many organisations which were interested in caregiver issues.

These included disease specific organisations like Alzheimer's and the MS Society, and many other disability organisations. Initially we met just to exchange information, but later worked on specific projects. For example we had obtained grants to produce Carers Alliance literature specifically targeted at political parties for the previous two General Elections. We always knew that 'singing from the same songsheet' was absolutely pivotal, and the work which had previously been done in forming the Carers Alliance ... in finding common cause ... really paid off.

If a Minister or an official had been able to find disagreement among us, or any sign of a lack of commitment, they would have had an excuse for not proceeding. Disunity was simply not an option. This is the first lesson I want to highlight.

I am sure that politicians the world over are the same. If they can find what they think is a valid excuse for not making changes, they will use it. So I cannot miss the opportunity to say here what I have said at carer conferences in many other parts of the world. There is nothing more vital than a unified approach. Any divisions will be exploited by politicians and prospective funders will be disillusioned. So, if you must disagree, do so in private. No one, least of all the carers to whom we are committed, will benefit from disunity.

This may mean compromise in all sides (for example in the carer manifestos we produced) in which the language was not as strong as I would have liked. But it was necessary to water it down precisely to get agreement and get all organisations signed up to it. Negotiation and compromise is all in these situations.

Given that I feel so strongly about the importance of unity, of the strength which can be achieved through it, I am sure you can imagine how absolutely delighted I am about your own Carers Alliance. Its formation and the efforts you have all put into it will, I am sure, be key for the future of the carer movement here as it was in the UK.

For greatly to our surprise, when we met with the Government about the prospects for the Bill, which we did really as part of our lobbying campaigning with no expectation of real outcomes, we found that actually the Government wished to support the Bill. Or rather, let me put it more realistically, it did not wish to be seen to be opposing it. Because we had such unity about what we were calling for, they almost did not dare to be seen to be opposing it.

There was a price for this, however. The original Bill gave carers not only a right to their own needs assessment, but also to a right to services thereafter. The Government would not sign up to that. The country was in recession and they feared the cost implications. This was a big decision. Should we agree to water down the Bill, get something on the Statute Book, and continue to improve things at a later date ... or should we let the Bill fall for lack of government support but claim a moral victory? We decided to go along with the Government's proposals.

This was not a problem for me I confess. I have always been a pragmatist and believed that change comes not by revolution, but salami-like ... in small slices.

I think there were some who felt this approach was a cop out, a climb down, a wrong call. History I hope proved them wrong. And of course, because we agreed to give way on a big issue, we were able to negotiate hard about other issues, such as the inclusion of young carers in the provisions of the Bill ... and bringing its implementation forward by a full year.

This is my second lesson. Legislation and policy change is always a compromise. The Act received Royal Assent in June 1995 and became law in April 1996.

The Act gave carers a right to ask for their own assessment of their community care needs and was the first piece of legislation outside the social security system to bear the name CARER attached to it.

We allowed ourselves some modest rejoicing as you can imagine but almost immediately turned our minds to the next steps we must take. We began of course by monitoring the progress of that first Act.

It quickly became apparent that the success of the Act reflected its official title ... the Carers Recognition and Services Act.

As far as recognition went, the Act was a great success. It raised the profile of carers hugely and gave carers more confidence to ask for their own assessment. When they did get their own assessment, it usually led to the provision of more services. However, too few carers still knew about the Act ... and of course they still lacked a right to services.

These were the next things which had to be tackled. We were especially aware that with no specific budget provided to implement the Act, local authorities (which administer health funding on behalf of government in Britain) could always say ... well, we support it but give us more cash.

At this point we decided against going for another Carers Act by the Private Members route straightaway. This was to do with the political climate of the time. Tony Blair's first government had been elected and we felt we had a good chance of getting it to embrace carer issues rather more enthusiastically than had been the case with the previous government.

The new government was certainly wanting to appear a lot more caring than the previous one. It was promoting the idea of social inclusion as a political philosophy, and carers were an obvious target group.

Moreover I had, to my great surprise, been offered a peerage by the incoming government, so as a member of the House of Lords and now revealed as a Labour Party supporter, I was able to have more access to Ministers to support our ideas.

We decided to try to get the Prime Minister himself to launch a new Strategy for Carers so that it would command the highest possible support and backing. The tone we adopted at this time was of the greatest importance. We wanted to acknowledge the progress which had been made thus far and build on it ... not take the line that the previous government was uncaring and this one was going to change everything.

This is you will appreciate not always an easy position to communicate to politicians, but a Carer Strategy is only going to be as good as those who implement it. You need to keep your line as politically neutral as possible, otherwise you risk alienating those who can make or break any Strategy. Besides, in politics one must always bear in mind that today's government is tomorrow's Opposition, and vice versa.

Third lesson ... be politically aware. Stay politically neutral however great the temptations or seductions offered by opposing parties. But do not be politically naive. Read the political runes, and react to them.

The Government agreed to take our advice on this and Tony Blair announced the National Carer Strategy in June 1998. Its terms of reference were:

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     To assess whether any key needs of carers had been overlooked;
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     To clarify the Government's objectives for carers;
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     To set out an integrated Strategy for future action;
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     To report to the Prime Minister in six months.

About this time I left Carers UK in order to take up a part time position which better fitted with my new responsibilities in Parliament.

After a period of consultation, the Strategy was launched by Tony Blair in March 1999. It included recommendations in four main topic areas, which would come as no surprise to any of you here in New Zealand:

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     Employment
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     Information
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     Support
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     Care for Carers

And made reference to the changes set in train in the social security system which would benefit carers, such as state second pensions.

The Strategy also drew attention to the particular problem faced by specific groups of carers, such as young carers and carers from black and minority ethnic communities.

The announcement of this Strategy in such a high profile way (carers were invited to Downing Street for the launch and it received massive media coverage) was, of course, of the utmost importance from a campaigning point of view, as were two specific promises made in the Strategy.

First, there was to be a specific allocation of money to local authorities to provide respite care for carers, and a future power was to be given to local authorities to provide services directly to carers.

This was the green light to the second piece of legislation which my colleagues in the carer movement had been seeking - the right of carers to have not just an assessment of their needs but services suited to them as a result of that assessment.

It was also a vindication of the decision taken at the time of the first Carers Act to take a small step and use it to build support for the next legislative step.

We did hope initially that the Government would announce a new Carers Bill in the Queen's Speech of 2000 - the speech from the throne which sets out the Government's legislative plans for the year. But that was a step too far. Instead we extracted a promise that the Labour member who came highest in the Private Members Ballot that year would be, how shall I put it, persuaded to take the Bill.

Fourth lesson - be patient. Seize your opportunities when they come, but don't set your expectations too high.

This experience with the second Bill was very different from the previous one. Different for me, because I was now a Parliamentarian and would be the person who would promote the Bill in the Upper House. And different for Carers UK, because it was not this time a question of persuading the Government to do something, but rather of trying to keep some control over the Government's actions.

The basic proposals of the Bill were welcomed by Carers UK because they built on the first round of legislation and on the Carer Strategy. The Bill:

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     Enabled local authorities to provide services directly to carers for the first time;
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     Strengthened carer assessments, allowing adult carers of adults a right to an assessment even when the cared for person refused to be assessed;
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     Included a money clause to provide finance for the new provisions;
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     Enabled local authorities to provide carers with vouchers for breaks.

There were, however, some major problems with the Bill in the view of Carers UK, and great amounts of lobbying were required to change parts of it as it passed through the House of Commons. Most of what we wanted was achieved either by government amendments or by Opposition amendments which were accepted by the Government. By the time the Bill came to the Upper House, intense work by Carers UK had ensured that:

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     Parent carers, originally excluded, had been included on the face of the Bill;
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     Carers could not be charged for services provided to the cared for person;
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     The informal nature of the relationship between care and cared for had been protected;
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     The legal definition of a carer had been protected.

We had not though been able to ensure that no carer would ever be charged for the services provided for them. I can't tell how much effort was made to try to solve this problem, how many public and private meetings held, how much pressure brought to bear both publicly and privately ... but in the end we had to accept, as we had with the first Act, that we had negotiated the best deal possible, though it was not an ideal one.

Lesson five -- there is always more to do.

So with no Opposition from my colleagues in the House of Lords and much support from all parties, this Bill too became law and received Royal Assent in the summer of 2000, coming into force in April 2001.

The Third Act of Parliament was a rather different proposition and marked another important step for carers. Its principal aims are to:

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     Ensure that carers are informed of their rights;
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     Ensure that work, lifelong learning and leisure are considered when a carer is assessed;
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     Give local authorities new powers to enlist the help of housing, health, education and other local authorities in providing support to carers.

All the legislation so far (and that includes not just specific Carers Acts but also the related Community Care and Health and Social Security legislation) had focused on carers' ability to provide and to continue to provide care. Carers services in legislation are based on helping the carer to care ... seeing carers only in relation to their caring responsibilities, and not the things that most people take for granted (work, leisure, education and learning opportunities).

This Act, also done through the Private Members route and this time by an MP who had himself been a carer for his son with severe learning disabilities, now amends the first two Acts so that any assessment of a carer must include consideration of whether the carer works or wishes to work AND whether the carer is undertaking or wishes to undertake education, training, or any leisure activity. This was hugely significant.

Other major provision of this Third Act is ensuring that information about what is on offer MUST be given to the carer at the time of the assessment and that any carer who looks likely to require a carers assessment MUST be told about their right to one.

Interestingly, this Act begins to amend the first two Acts, to ensure they are as relevant as possible. And is a further vindication of that decision so long ago to get SOMETHING on the Statute Book even if it is not perfect.

It is perhaps not very widely known that prior to striking lucky yet again in the Private Members Ballot, Carers UK was itself going through an extremely difficult time, as all organisations with the best will in the world do from time to time. Carers UK was experiencing a severe financial crisis and was having to cut staff and retrench in a very painful way. So difficult was the crisis that Carers UK might have turned its face away from the huge risk and workload that servicing a Bill takes, and concentrated only on keeping its core services intact. This it did not do, and for that I have the greatest admiration.

Of course the decision to proceed anyway was vindicated because the publicity and goodwill which was generated was the saving of the organisation, both in terms of funds and reputation.

I am happy to report Carers UK is now thriving again.

Sixth lesson -- always seize the opportunity when it arises, however hard that may seem at the time.

So here we are with three Acts of Parliament on the Statute Book and the question we must ask is what difference have they made for the carers of the UK?

For certain their problems are a long way from being solved. Most carers in the UK are like carers all over the world ... unrecognised, uninformed, and unsupported. Most local authorities still say they have not sufficient money to provide the support which carers need. Recent research by Carers UK showed that some were diverting money into their main budgets even though it is 'ringfenced'.

But carers do have legal rights now and that gives them infinitely more negotiating power than before, infinitely more public profile and infinitely more recognition in public policy terms and on the political agenda.

It is unthinkable now that any political party seeking office or any local or health authority providing services would not include carers as a priority group. In recent announcements of public spending plans, carers were provided with more money by both the Treasury and the Health Secretary. Policy developments in health and social care always place heavy emphasis on the voice of the carer and on including them in decision-making processes.

Carers are well out of the closet, and there is no putting them back.

Would this have happened without the political and public awareness campaigns run so successfully and efficiently by Carers UK around the three Acts of Parliament and the National Strategy? Probably not would be my judgment. But neither would the three Acts of Parliament alone or even the National Strategy have been enough.

A constant process of lobbying, campaigning and awareness raising is what is required. No opportunity must ever be missed to promote the carers cause, no invitation to sit on this committee or that taskforce can be declined, however that stretches the time and patience of those involved.

At present my colleagues in Carers UK - overstretched as they always are - are planning their strategy to take advantage of the political timetable in anticipation of a General Election.

Is this an opportune time in the UK to get the Government to review how its National Strtegy is working ... to update it ... and make further commitments? Can we also use that to influence the Opposition parties and to get them to make other commitments themselves?

This is of course a tremendous challenge for carers and all those who work with them. But twas ever thus with all causes which are worth fighting for. This relentless process of selling the message is the real work of carer organisations throughout the world.

Legislation as I have said can perhaps be seen as a kind of punctuation mark in the progress we make. Or we might refer to legislation perhaps as battles in the war we are fighting for carers. The war is a long way from being over, but I have been very privileged to take part in some successful battles.

To summarise, the six main lessons I have learned from these battles are:

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     Be united, make sure you are working together toward the common cause.
  2.
     Be prepared to compromise and negotiate.
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     Stay politically neutral.
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     Be patient.
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     Be aware there is always more to do.
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     Never miss an opportunity.