Cancer Sufferers and Political Panic in Scotland – how not to make public policy?

 

 

Don’t ever say that governments can’t move quickly when it suits them to do so – usually under the lash of potentially embarrassing public opinion .

We had a marvellous example of that in Scotland this weekend [ or , possibly even today , Monday 20^th May. ]

For the past few years , as an ever wider array of cancer addressing pharmaceuticals has come on stream , the expert mechanisms we have for assessing the efficacy of such drugs has tested the decision making processes of government .

In both England & Wales , and here in Scotland , we have expert bodies charged with assessing the clinical efficacy and the ‘value for money ‘ of  new and often highly specialised treatments . South of the Border it’s NICE; in Scotland the Scottish Medicines Consortium . Understandably these bodies take time to consider possible treatments – time which those suffering with later stage aggressive cancers don’t have .

As a consequence both the UK and Scottish governments have cut corners in order to override – or accelerate past – the procedures they themselves have set up . In England there is a short term Cancer Drugs Fund , here in Scotland the Cabinet Secretary for Health recently  made money available to support a similar sort of ad hoc provision .

Despite that attempt to catch-up in Scotland it seems pretty clear that a number of medics [ reported in the media last week ] ; patients organisations and some patients think that from their point of view Scotland lags . Last week at First Ministers Questions in  Holyrood, Mr Salmond was ambushed by the presence in the gallery of a bowel cancer patient who was  considering moving to Newcastle to get appropriate medecines for her condition on the NHS rather than paying for them herself here in Scotland .  

Following the spectacular Jolie coverage of the week of 13^th  …the story runs thus:

Wk. 13^th NICE in England announce plans to make breast cancer genetic testing available from next month

19^th When this was covered  in the Scottish Sunday papers ‘….no  comment was available from  the Scottish government…’

19^th /20^{th Overnight:}  Breakthrough Brest Cancer ‘..hopes that Scotland will follow this step in due course…’

20^th May ‘ Due course ‘  turns out to be later the  morning of the 20^th ,  when the Cabinet Secretary for Health announced ‘….it had been agreed in April to extend the testing in line with the new NICE guidelines south of the border….’

Commendable if you’re a cancer sufferer , but when decisions in this complex policy area appear to be arrived at in such haste you wonder just what is going on .

Universal benefits : good principle/often poor practice? In Scotland [ + elsewhere] today & tomorrow … & tomorrow

The Scottish media saw   a flurry of activity last  week over the apparent leaking of  a year old report from John Swinney the Cabinet Secretary that cautioned his cabinet colleagues on the balance of available revenues and the ambitions for public service improvements that they might all have.

The headlines were all about an independent Scotland not being able to afford state pension payments and various other looming disasters  that such  a constitutional change might  mean for us . It was claimed – by some – to be a huge blow to the ‘Yes’ campaign

Personally, I incline  to the view that  it’s the cover- up that will do the   damage to the Yes campaign  ;  look at Nixon [ ex President ] ; Huhne [ ex various things]. It is getting to be a b it of a habit for this SNP government  - or maybe they just get found out more often.

Reviewing  what kind of social entitlements and cash benefits we should have, and any society can afford,  and the way in which they actually serve the kind of social purpose those who introduce them  argue for,  is just the kind of discussion we should have in a mature democracy . However…….maybe we don’t really live in a mature democracy ?

I have recently been in discussions with different groups of people where ] we have talked about benefits/entitlements / costs etc . Although at one  meeting  I was labelled as  being in favour of ‘means testing ‘ the discussion in each case  was generally quite reflective .

I am not in favour of ‘means testing’ , although I must admit  if I could find another phrase that could replace that old cliché , I’d ©; ™; or ® it faster than  the speed of light and licence it to every government around, cos they’re all looking for something similar.

What I am in favour of is a  more reflective and candid discussion than we generally have about the reach and purpose of various forms of social and cash entitlements  & benefits , many of which go remarkably unexamined . The reason I argue for this is that we could then have a clearer sense of what we’re trying to achieve through our wide range of  service entitlements and cash benefits .

Consider 3  different forms of entitlement /benefit /service that are :

A] Universal in form; that available to everyone who meets certain criteria [ often age or capability related] and are totally  un-related to any individual or household income;  and

B] Either politically entrenched as a hot rail  issue for every  party or just plain taken for granted and never explored in any  broader context.

C] A benefit or service than I access  , enjoy or use so have direct participant experience of .

Now I could write pages and pages on each of these benefits, with comparison  and data to support my arguments ,  but  here  I’ve included just one factor  that I think shows why we might, at the very least,  talk about these  more thoughtfully  than we do at present .

1. In ‘The Scotsman ‘ this week-end , Tiffany Jenkins wrote a persuasive [ though poorly evidenced] commentary on maintaining free entry to galleries and museums . I’m one of those people who goes to such galleries and museums a lot , in various places throughout the UK . On that same Saturday afternoon I went to the theatre , where I was expected – and I expected – to pay for my ticket . Why are the visuals arts privileged over the performing arts – and has anyone even noticed that they are ?
2. I recently bought  a painting and paid for it ; that’s unsurprising isn’t it . The previous painting we bought – or technically are still buying – was purchase through the ‘Own Art ‘ scheme operated by Creative Scotland [ and the sister organisations in NIreland and England] . My purchase was interest free over 10 months and no deposit required . Probably the best credit terms you can get . It’s operated through Hitachi Capital – who, not being a charity ,  I imagine get their interest on the loan paid by somebody . Those of you who are taxpayers and don’t buy such pieces of art financed my  loan .Thanks for that folks; I really am grateful .
3. I have  a bus pass – or as it is technically referred to – ‘a national entitlement card ‘. Since I used to buy a monthly pass  for Lothian Buses anyway, I have  a pretty good idea what such bus access would cost me – if you could buy an all Scotland season ticket – and reckon it worth about £90 or so a month. Of course pre-tax it's worth a lot more than that to some of the beneficiaries. I am fortunate enough to live in a city with one of the best bus services in the country close to a  route where I can  get on any one of 12 or so services , rarely waiting for more 2 or 3 minutes . We have family who live in Perthshire where there is one bus service. Other than at either end of the school day , services are hourly or so , except in the evening when they are 2 hourly . In such villages, and many other parts of Scotland, access to car is a necessity rather than  an added convenience . Is a ‘transport voucher ‘ of this kind as valuable to the 000’s of people in Scotland who don’t have the same kind of access to frequent bus services of the kind I have ?

The discussion we should be having is surely that in circumstances where all resources are scarce – and they always are scarce – what’s the optimal way of organising taxes; benefits and charges  to the best advantage of those people we claim we’re doing that for.

 

 

 

 

 

 

Scottish Local government after 2014; all change..whatever?

 

A slightly adapted version of a 'Comment' by me published in Sunday Herald  of Febry 24th  pp31/32:

RICHARD KERLEY

 A preview of the CoSLA conference debate on the future of local government and constitutional position of local government in a future Scotland.

To date ,   public debate on  whether we have Independence [ or not ] has centred on what relations might be created with a variety of international bodies ranging  from the other countries of the British Isles, to the United Nations and the legacy institutions of the UK such as the Crown and the DVLA . 

As for any discussion about how things might look within Scotland after 2014  it’s been pretty much limited to the Yes campaign telling us all  that it will be  ‘… much , much, better’ and   their opponents -Better Together -  bewailing how dreadful it will be .

So far there has been little serious discussion about just what changes we might expect to see in those  of our institutions which  for most people are  the reality of government  on a day to day basis. Even those who argue that we should  be talking about what kind of Scotland we might like to see,  tend to be  vague in their expression of that future condition; nicer , kinder, and fairer seems to summarise it . 

It’s a positive step that the annual conference of the Convention of Scottish Local Authorities [CoSLA] will be asking Nicola Sturgeon and Alistair  Darling to tell us what they think local government in Scotland will look like after 2014.  On  the downside, I am not sure that either of them will give delegates clear and specific answers to that question. I may be wrong,  but  the demands of campaigning  tend to militate against providing certainty and specific  proposals .

It  is worth thinking  about just what might be in store for local government post 2014, because of all public service agencies it is the one that tends to provide the greatest range  and depth of services right to our doorsteps and for all generations.

However, what I suggest is that regardless of how we all vote in 2014, the future for Scotland’s 32 councils after that Referendum vote is going to be very similar, whether there is a majority Yes or a majority No vote. 

Firstly  , barring a spectacular bust up, we’ll have  an SNP government for at least 18 months [ 2 budgets ]  after October 2014 and regardless of the referendum vote  it will be under enormous pressure to achieve costs savings in those parts of the state that can be easily squeezed in order to provide popular vote winners from a still  limited budget . Even with independence , most detached commentators suggest  continuing pressure on public services for a long time ahead.

Second , we know that if we vote for independence we are promised a constitution, and I am sure  that in any such document there will be a clause  about forms of local government in the new Scotland . Such a constitutional clause  won’t say - ‘There will always be a Fife .’ At best it  will be some form of provision stating there will be some form of elected local government ; little  to say on powers, budgets, etc . and nothing on the number and therefore size and geography of our councils . 

Although the current government has continued their  2007 commitment  of no council re-organisation , after 2014 all bets will be off,  regardless of the outcome of the vote . An administrative re-organisation seems  a sure-fire way of saving money from parts of the organisation that appear to be readily dispensable with limited  impact. It probably would not be such an easy  money saver,  but it can appear an attractive easy option .   At present such enforced changes are happening in Further education , and would be in Universities too, if Mr Russell had his way. The Justice Secretary is already convinced that the merger of Police and Fire services is a success even  although this has not yet actually happened,  and the savings are proving more painful than at first claimed . ‘Mergertastic’ is a game all the Cabinet can play.

There are various voices claiming we have too many councils in Scotland, although very few people who can tell me what the ‘right ‘ number might be . Either way, post 2014 we’ll find out what the government actually thinks .

And you can read more about some of these changes in the CSPP / Herald public services supplement on 28th February .

Mid Staffs ; sameold, sameold? A case for ‘PatientAdvisor’ perhaps?

 

I’ve had a week or so to look at the Francis report, and I continue to light upon  fresh  aspects it reveals of what was a tragedy  for the many people who died – probably prematurely  and in excessive numbers – and the families who have been left to mourn them,  as well as the organisational disaster that will keep people  in discussion of  it for years.

The report –as you’d expect from a top QC – is in many places forensically detailed and  only begins to wobble when we get on to the recommendations – an awful lot of them . I tend to the view that any report that puts forward  290 recommendations has picked up the shot  gun rather than the scalpel.

And if any government [regardless of party ]  did implement them  ? You could make a good case that if implemented in full ,  proposals for more regulation and sanctions might even reinforce the ‘evade the blame ‘ culture that permeates such large complex bodies as hospitals , universities and government at all levels

The report also refers back to the legacy of earlier reports  into hospital disasters. Francis reminds us that the report into Bristol United Hospitals' Trust had many mentions of that useful old friend of professional and organisational failure: ‘hindsight ‘ . Francis ruefully  observes that in the evidence transcript for Mid Staffs , there are 123 instances of  ‘hindsight’ and 378 ‘with the benefit of hindsight ‘.

His reference to the Bristol enquiry – where it was determined that admirably enthusiastic surgeons were trying paediatric surgery beyond their reach and kids were dying – made me think about trends in such hospital  disasters and whether they come in different types  .

And there are  trends ; not all hospital disasters /scandals are the same , though they often have one feature in common ; more on that below.

Some such disasters  - I think disproportionately many – emerge from within the still  pretty closed world of care for people with mental health or learning difficulties . The Ely hospital scandal in Cardiff back in the 1960’s ; the Winterbourne assaults filmed for BBC Panorama last year . These occurred where vulnerable people were in a closed institution , in some instances people who couldn’t even express the reality of what was happening to them . Even worse , you suspect in some cases they thought that kind of treatment was normal practice.

Some scandals clearly arise from the [commendable?] ambition of some medics to pioneer new developments, developments either beneficial to them  ; their hospital or for medical science generally . Events  at Bristol and at Alder Hey [ where organs were stripped from dead infants and stored for research ] fall into that category .

No less ghastly , but probably unclassifiable ,  is  the occasional solo deviancy  of people such as Harold Shipman and the other medical staff who have exploited their position to kill or harm patients. We shall probably never know what motivated people such as these.

I think it’s interesting that  if we compare the big hospital failures such as Ely, Bristol Alder Hey, and Mid Staffs  there are common factors as well as differences, and the two that seem critical to me reflect both a changing set of society values and changing technologies .

When I looked back at the Ely Report [ 1969 ] I was surprised to find that the enquiry reported the balance of external [ family and carer ] comment on the incidents examined in various wards of Ely Hospital was generally positive – by a facto of about 5:1 as far as I can see. In Bristol, even at the GMC hearings , there were parents and family willing to publicly support the actions of surgical teams  who were considered on empirical evidence to be deficient in skills for the procedures they carried out . Even Harold Shipman had patients and patients relatives willing to provide positive comment on his medical care.

Such familial support for deficient, even neglectful and potentially criminal  practice , seems to be entirely missing at Winterbourne and in Mid Staffs. That may be because  of overwhelming evidence or it may signal the complete collapse of patient deference for medical authority . Either is significant .

The other factor that is critical in achieving comfort and assurance on the quality of health care is information . As Robert Francis observes in his summary  : “Public should  be able to compare relative performance “.

It’s worth considering  some fundamental aspects  of accessing and using such  data  :

• the starting point for the growing anxiety about Mid Staffs was the publication of atypical death rates at MS by Dr Foster , a private business  ;
• when such data was made available to decision makers in the hospital they looked the other way ; challenged the data methodology and commissioned academic research to challenge the methodology & conclusions that might be inferred from the data;
• with the benefit of that famous hindsight, or with ‘real time ‘  access to data on patient death certificates in the GP practice where Shipman worked,  someone might have noticed that over an extended period Shipman had more patients die than any of his colleagues .

Actually health service data remains very hard to access – whether in England and Wales , or in Scotland [ where we have our own hospital problems currently subject to scrutiny]. Data is  getting better , but it still remains occasionally ropey; hard to analyse and to derive any sound  conclusions from.

I’m coming round to the view that as well as all the necessary statutory initiatives, maybe, just maybe there’s a place for somebody to launch ‘Patient Advisor’.

 After all ,  a lot of people put a lot of energies into Trip Advisor, and other people pay attention to it. Not as the only word , leave alone the last word , but as a source of information they use for  a much less important decision than people entering hospital make.