Health Act rag bag delivers part of the real prize

Health Act Rag Bag

Almost unremarked in the rush of bills getting  the Royal Nod on Friday  the 13^th was the rag bag of measures collectively known as the Health Act 2009. Tucked away among new powers to strengthen tobacco control; to place a duty on all NHS bodies, private sector and third sector providers of NHS services to have regard to the NHS Constitution (more on that in a later blog); to deal with (whisper it) failing Foundation Trusts; to require (largely meaningless) “quality accounts” from NHS bodies and to reform pharmacy services is the provision to give money directly to certain patients so they can obtain their own health care.

It’s Getting Personal

But it isn’t as simple as it looks – the consultation on the regulations and guidance is pretty daunting.  The real problem is that this will deliver only half of the prize that should really be on offer:integrated health and social care individual budgets reflecting the real level of user and carer need.  This is going to be big in coming years given an ageing population and more people with long term conditions surviving for longer periods with better quality of life.  How many?  The think tank Demos At Your Service report estimates 1.5m people in five years will be controlling personal budgets for health and social care.    When this happens, public services will never be the same.

The progress in freeing up NHS money so it can flow direct to individuals for this purpose is welcome (NHS money can already be handed to third party organisations to spend on behalf of individuals) and it evens the scorecard with what is increasingly common practice in social care. In fact, the consultation on the health care budget regulations largely proposes to mirror existing good social care practice.  If this is a hint that the two channels of care services are converging then we welcome it.

If our public services could just get their acts together about this we might see some progress towards the real prize.  David Cameron had the right idea in his recent statement on health priorities earlier this month when he included as part of a reform of long term care that “budgets combining social care and health care funding for people with long-term conditions will be rolled out.”

People Powered Public Services

The latest report from NESTA*  The Human Factor provides the evidence about moving to “people powered public services”  which could save billions. It should be required reading in PCT and Local Authority boardrooms as well as by political party strategists. The word is that Andrew Lansley likes this approach.   Both parties are making noises that the boundaries between health and social care services are going to be intentionally blurred in the near future.  In that light, keeping separate budgets for healthcare and for social care is simply perverse and discriminatory against the very groups who are meant to benefit.  It perpetuates an impediment to integrated services which goes back to 1948.  It really is time to come into the 21^st century with how we commission and provide public health and social care services for our increasingly complex and diverse population.  That’s the challenge MAC would like to see all parties grasp as the election temperature starts to rise.

*NESTA is the National Endowment for Science, Technology and the Arts

More on MND film ‘Sarah’s Story’

We have inserted as a comment on the original piece in February this year, news about the ASA judgement following complaints that the film ‘was offensive and distressing’.

Mugged in Soho by MND

“Text cloud” for this post below, created by www.wordle.net

Last week I went to the Curzon Soho to see Sarah’s Story, an awareness raising cinema advert produced for the MND Association. It runs for 90 seconds. Believe me, you don’t want it to be longer; your awareness couldn’t take any more raising at this intensity in one sitting. Brilliantly conceived and executed using full-on cinematic effects, Sarah’s Story graphically – and viscerally – conveys what it is like to be mugged by an unseen assailant who progressively assaults and steals your normal functions leaving your mind trapped in a malfunctioning body. In this case the “mugger” is motor neurone disease (MND).

In 2007 the MND Association did the poster campaign on the Underground “John’s Journey” which attracted complaints to the ASA, but lots of good publicity for their cause. I wouldn’t be surprised if the same thing happens this time, only more so. When you are trying to get over what it means to be assaulted by a devastating neurodegenerative disease, pulling your punches does no good. So full marks to everyone on the MND Association team who delivered this result and got it all donated, probably about £1m in production resources.

Sarah’s Story will upset many, including probably some people with MND. But that is unavoidable and part of what it has to do to get its message over. Sarah Ezekiel – the real life Sarah whose story it dramatises – spoke very movingly after the screening about her motivation to participate in the filming and production process. Using automated speech of course she said,

I’m so pleased that I was able to take part in ‘Sarah’s Story’. I think the advert is shocking and disturbing and reflects the devastation that MND causes. I hope that it will raise more awareness and we will be nearer to finding a cure.”

Here’s something else I find shocking – Sarah’s Story has a “15 certificate” for cinema release. Younger British filmgoers don’t need protecting from the truth of what it is really like to have a devastating illness, do they? Perhaps the British Board of Film Classification would like to explain just who they think they are protecting and from what by slapping on this restriction? Of course having MND is horrible: that’s just the point!

As well as the microsite with the advert and stills from the filming, if you are into the techno side of modern film-making, then spend 13 minutes to watch the “making of Sarah’s Story” for a behind the scenes look at how this got from concept to screen. Then you will appreciate where all the talent and money goes to make 90 high-impact seconds on the big screen.  You won’t forget it easily.  Nor should you.

New Health Bill moves towards individual commissioning budgets

The Health Bill 2009  introduced into Parliament on 15 January boosts the personalisation and choice agendas by enabling direct payments for healthcare to people in England.  There are already 60,000 people receiving direct payments for social care.  This is a big step towards the objective of individualised commissioning which joins up health and social care.  MAC strongly advocates this for people with long term conditions who wish to take greater degrees of control over planning and delivering their own comprehensive services.  It also points towards the achievement by 2010 of individually agreed care plans. That is a key reason why we worked with the Motor Neurone Disease (MND) Association to create the MND Year of Care commissioning tool, which will be invaluable in creating and costing individual care plans for people with this condition. 

All of this was trailed in the Darzi Next Stage Review report High Quality Care for All along with the suggestion that individual budgets might be most advantageous to people with complex and generally deteriorating conditions such as MND or multiple sclerosis or Parkinson’s disease.  We agree, provided that assessment processes linked to budget setting do not become burdensome in the face of what can be a rapid pace of deterioration in these neurological conditions.  Using the MND year of care tool to predict needs should reduce the need for reassessments.

The Health Bill coincides with an NHS Confederation report claiming that direct payments could “revolutionise” patient care.    Personal Health Budgets: the shape of things to come? argues that giving patients control over healthcare funding could provide enhanced outcomes and change the nature of the patient-professional relationship.  We hope personalised budgets and individualised commissioning for those who want to use it with support and help available from expert 3rd sector organisations will be the shape of things to come. 

As Secretary of State Alan Johnson said launching the Bill, “People rightly have high expectations of the care the NHS offers, and they want more control over their own health – which is why the bill will give more power to patients and drive up the quality of care.”  Conservatives and Liberal Democrats also welcomed this, so the chances of making progress are even better. 

Of course there are the inevitable nay-sayers amongst some of the self-interested professional groups.  Unison  warned of  a “real danger of creating a situation where patients use their personal budget ineffectively and then, like Oliver Twist, go back for more. Or, patients will be persuaded to top up their budgets from their own savings, undermining the founding principle of free healthcare for all.”  Unlikely we think, especially if there is s strong link between users and 3rd sector bodies to advise them about making good choices, or even holding the budget for them and spending it with their agreement. 

The BMA made the rather eeyorish observation that it was “currently very unclear how such a system would work in practice – for example, what would happen when a patient’s budget ran out? Moreover, this policy seems further to establish the idea of healthcare as a commodity, which the BMA does not believe is in patients’ best interests.”   Those presently in control would say that sort of thing, wouldn’t they?  

In rebuttal, we can think of no one better than Jon Glasby,  professor of health and social care at Birmingham University,  who said, “personal budgets have allowed people in social care to be much more imaginative and use funds more carefully than the system did. There is no reason why this should not happen in health.  However, it will need to be carefully introduced.” 

An agreed individual care plan is the essential first step to identifying a personalised budget.   Real choice, as the MND Association said in their response to the Health Bill’s publication, also means the choice to opt out of personal health budgets and still receive high quality and timely care and support.   Expert organisations like the MND Association which are close to their members and understand in great detail what it is like for individuals, carers and families to live with a devastating disease feel that even with the risks, individual budgets are worth exploring.  

Helping patients and carers raise their expectations about what should be acceptable is part of this.  As Heidi Macleod, Director of Care Development at the Motor Neurone Disease (MND) Association said,  “we support and promote the principal of increased patient choice. This initiative has the potential to improve control and flexibility in care.  A further benefit is raising the expectations of patients about what should be acceptable in terms of quality care and shared decision making so that they can make better choices, including end of life decisions, for themselves.”  MAC believes that with the right kind of support, that is a prize worth striving for.

Best Practice in End of Life Care – MND Association case history

This week the MND YOC (the Year of Care commissioning tool) got prominent exposure as a featured example of condition-specific good practice in the National Audit Office’s End of Life Care report.  The Public Accounts Committee (PAC) will now conduct hearings on the NAO report on 17 December – open to the public - and then prepare its own report with recommendations for Government (to which the Government must make a published response).

There is something very satisfying about seeing work that MAC partners and associates have laboured long over for clients getting noticed in the right places.  So it is with the MND YOC.  Launched in the summer of 2008 after almost two years of work, it is now available electronically to all in the National Library of Health’s specialist neurological library, together with the “Learning from Leeds” report on how the views of people with MND, carers and staff made a real difference to the final version of the tool for commissioners.

The witnesses before the PAC will be the CEO of the NHS, David Nicholson, and the ”cancer czar”, Prof Mike Richards.  Given the long-standing interest MPs have in the inequitable provision of end of life services around the country and the well-deserved tenacious reputation of the PAC under its chairman Edward Leigh MP, the encounter on the 17th of December should be worth watching.   Expect to see a bit of squirming.

MAC is delighted to have helped the MND Association make a contribution to stirring up greater interest in this subject and we will be following the PAC’s work on end of life services closely.

August Newsletter – Health without frontiers and devolved responsibilities

A mixed range of opinions posted in July and early August. I offered the NHS a new rock anthem ‘Turn Me Loose and Set Me Free’ to celebrate as the NHS moves from targets to devolved responsibilities under the new Constitution. David Nicholson the NHS Chief Executive told patient and user representatives to ’cause more trouble’.

Andrew Craig delved into the EU directive on health without frontiers with a reminiscence about handling a complaint for reimbursing a patient who saved her hearing by going off to France for an operation which the NHS kept promising but never delivered. He concluded that health travel would broaden the minds of British patients and vice versa. And acute trusts here looking to keep up their balance sheets would do well to consider where the waiting lists were longest in member states as health travel will work both ways. Fleishman-Hillards’ blog “Public Affairs 2.0” picked this up and gave it pride of place in its review of blogosphere opinions about the directive.

Two blog pieces also looked at activity outside the UK with the first written from Canada on current obsessions with detached body parts and how Canada’s best selling newspaper approached reader representation. The other looks at the way one Ontario hospital does its follow-up questionnaires for in-patients 4 weeks or so after they have gone home.

Closer to home, MAC’s Caroline Millar and Rebecca Macnair went on the day of the NHS 60th birthday to the parliamentary launch of the motor neurone disease year of care pathway commissioning tool. This culmination of two years work with the MND Association was praised by Baroness Finlay, professor of palliative care at Cardiff University, as “one of the most important pieces of helpful documentation I have seen for patient care [whose] beauty is its simplicity.” Now we embark with our clients on the implementation phase, including action research with four pairs of NHS and local authority commissioners as they put the commissioning tool into practice. This should produce a rich learning stream about how statutory organisations work together, with 3rd sector bodies and most importantly with patients and carers to improve quality – Lord Darzi are you listening? Belated Happy Birthday NHS.

Colin Adamson
Partner
The Moore Adamson Craig Partnership

Section 242 and the Disability Equality Duty – Making a Happy Marriage

We do not get many comments on the blog so we were delighted when Michelle Valentine, the author of the piece that follows, was sufficiently interested by an entry that Andrew Craig wrote in March on complying with Section 242 to note in our comment box “This new duty could be quite a powerful lever for disabled people, and it will be interesting to see how this duty will be implemented alongside the duties imposed by the DDA 2005 to involve disabled people. I would welcome a discussion about this.” This was rather unwise of Michelle because of course we immediately invited her to kick off such a discussion. Her article follows.

Michelle has her own consultancy Disability Forward Ltd and we know her from her work with the BSI Consumer and Public Interest Network. You can reach her at michelle@disabilityfwd.co.uk

Section 242 is shorthand for the general legal duty on the NHS to consult and involve service users in everything to do with planning, provision and delivery of services, which has applied since 1st April this year. The Disability Equality Duty, which applied to all public bodies including the NHS from December 2006, requires it to pay due regard to the need to:

• Eliminate unlawful discrimination;
• Promote equal opportunities;
• Eliminate disability related harassment;
• Promote positive attitudes towards disabled persons;
• Take steps to take account of disadvantage experienced by disabled people even where this involves treating them more favourably
• Encourage participation by disabled persons in public life;

NHS bodies also have to meet the specific duty which requires them to:

• Develop, publish, and monitor progress against a disability equality scheme
• Involve disabled people in the development and evaluation of schemes
• Produce single equality schemes but they MUST show how they meet the DED specifically

The two most important aspects of the Duty which should dovetail with the Section 242 obligations are the need to take a strategic approach which addresses the causes of inequality and lack of access to services at a macro level, using the social model of disability, and the duty to effectively involve disabled people in policy scoping and policy decision making as well as monitoring policy implementation at the coal face.

So, taking a strategic approach that uses the social model of disability, what does that mean here? Let me use an example in relation to social services, An individual complains that the accessible lift fitted in their home by social services has been working intermittently for several months. Another individual complains that they have not used the equipment provided to them by social services because they ‘manage as they are’.

Firstly what’s the link between these two cases? To answer this NHS bodies need to go back to their procurement strategy and your contract processes for equipment and adaptations for older and disabled people and ask:

1. Has the procurement strategy effectively involved disabled people and industry representatives?
2. How has their input influenced the strategy?
3. Has the strategy been equality impact assessed, properly?
4. Have the contract arrangements ensured that there is a proactive and effective equipment maintenance process which does not rely on the disabled person dealing with lots of different companies?
5. Is there ongoing support for people who have equipment provided, but may be fearful or reluctant to use it without ongoing support and advice from someone, or may have felt that they were given something that they didn’t want and weren’t given what they did want?

But what about the social model of disability? Some readers may not have heard of this so I will put it in very crude terms. There are basically two ways of understanding how disabled people are viewed by society. The medical model basically means that society sees disabled people as the problem because we have ’something wrong with us’ and who need medical and other interventions to make us more like non-disabled people, i.e. more ‘normal’. However, those who operate within the medical model and the NHS is really still doing this, will focus on the disabled person as the one that needs help and assistance. The social model turns this on its head and states that it’s society which is the problem, because it has not designed itself to include disabled people, whether in terms of the physical built environment or in terms of employment, services or any aspect of civil life. So the focus for change is on organisations, employers, service providers, government etc. Of course, reality is never so clear cut. As a visually impaired person I carry a symbol (white) cane so that others are aware I cannot see well, and I also have adaptive technology to make computer use much easier. I wouldn’t be without these, any more than a person with Diabetes would be without their insulin, but I still expect employers and service providers to meet their legal duties and involve us to enable them to make sensible decisions about how to improve things.

So to go back to the faulty lift and the unused equipment, it would be tempting for the authority to see both cases as unconnected and related to those individuals, but if they answered the questions above and got a no, or a ‘we can’t evidence that one way or another, or it’s supposed to happen but we are not sure it does’ then how can they say the problem is related to that individual?

A much better understanding of what a strategic and thorough approach to equality really means has to be developed in Section 242 and the Duty are going to be effective.

Secondly, In order to ensure effective implementation of both duties there area couple of other things that NHS bodies MUST address:

1. They must understand the difference between consultation and involvement. Often the two terms are used interchangeably and this should not be the case. Disability Forward would suggest the following definitions:
   • Consultation – a passive process where the agenda has already been set by the consulting body and where there is often no clear evidence of how consultation responses have influenced thinking
   • Involvement – a professional process of engagement and in-depth working between disabled people and organisations, and which delivers tangible benefits and outcomes for BOTH parties.

   The Disability Rights Commission (now replaced by the Equality and Human Rights Commission) has produced guidance on involving disabled people, which is a good start but is only that.

2. Understand what ‘representative group’ means
   Disability is a complex issue, not all people with visual impairments have the same access requirements, some people have multiple impairments, and some people may have access requirements but don’t see themselves as disabled people. Therefore any attempt to work with ‘representative groups’ needs to be much more sophisticated than it has been generally to date.

Overall I think as they say on TV Section 242 and the DED were ‘made for eachother’ but as well all know few marriages work without give and take and understanding.

Michelle Valentine
Director
Disability Forward Limited (contact information)

Complying with the Section 242 Duty to Consult and Involve Users of Health Services