'For the first time in my life I have had to deal with politicians and civil servants and now I know why the country is in such a flaming mess'. Those were not my words but said to me by the late Tom Clark, Sports Editor of the Daily Mail, after the daft Moscow Olympic Boycott. But they do very tersely sum up my experiences with NHS and Council Managers over free care for our members and others.
The two long-standing Guillain Barre cases are still stalled. I have visited both recently. In Essex, where they started paying in July, 2001, (I think the first victory by anybody anywhere in the country) they agreed Arbitration in 2002 over the further refund of £21000 back fees, but a new administration is refusing to go ahead. In Liverpool, where Colin Mercer's condition is identical, they are still stalling, leaving us contemplating legal action.
There we are awaiting the imminent Press campaign by NACODS, the Pit Depuies Union, who emailed me on Thursday
The next step is to get our Counsel to advise finally before we issue proceedings. This is the case where we go public on the whole issue. I will of course inform you in advance of the launch date.
We are lining up a number of spokesmen from the various organisations that gave evidence before the Health Committee inquiry. In addition we have a number of individual cases ready for the media. However we need a court success to get all this off the ground and NACODS in Wales will fund it.
However, last month the Court of Appeal ruled 'Reasonable requests for mediation could no longer be shrugged aside with impunity by the legal professions' and linked with the NACODS publicity we will now demand for Colin the appointment of a Mediator genuinely independent under Article 6 of the Human Rights Act.
In Essex we are saying that the Court has thus ruled that our Arbitration agreement is the correct way forward. In both cases we are asking the M.P. to back us. I hope I can tell the NHS authorities involved that this Conference fully supports our demand that the Court ruling should be obeyed.
In January 2002 we won for a member in Scarborough a refund of £1500 paid for care at home, nearly two years before the landmark Pointon Case which through the Ombudsman established the general principle that care at home could be free. I then made application for free care at home for another member. I pay tribute to Havering Social Services, who at once agreed not to ask for payment of the £39 a week until the PCT decided. The PCT refused to answer any letters for two years until Angela Watkinson M.P. intervened. The PCT then spent 6 months gathering medical reports. The file is 5 inches thick.
Meanwhile another case arose in Colchester and Councillor Lucas arranged for Essex not to seek payment of a similar amount until a hearing had been held in Havering. This was due next Friday and I had arranged to visit both members last Tuesday. However, ten days ago I received a letter saying they had revised their procedures and all hearings were cancelled. My reply was explosive and I have sought Angela Watkinson's support.
My great fear is that other Guillain Barre sufferers will be lured into paying before they know the law. In a couple of cases in which we declined to pay the patient sadly died before the matter could be resolved. This shows that the NHS rulebook saying that those on the point of death should not be required to pay is being flagrantly ignored, but at least they were saved several thousand pounds each because their families knew their rights.
It was therefore good news when Lord Hunt, then Health Minister, promised Parliament that all patients and their families would be told their rights. It was bad news that the Government broke this promise. I protested to my M.P., Michael Foster. It was good news when on 27th Feb 2004 I received his reply saying a Directive would be issued. It was issued hat day. It was bad news when enquiries across the country showed that in many areas the Directive was being ignored. In Brighton last December the failure was so blatant in an Alzheimers case that I complained to Lord Hunt, who wrote to John Reid.
The good news was that in February the Surrey and Sussex Health Authority then issued a leaflet complying with the Directive. The bad news is that it concluded with the words " The eligibility criteria for Surrey and Sussex have been agreed .............as " Coughlan compliant" by the solicitors who were involved with Miss Coughlan
In fact Nicola Mackintosh, Pam Coughlan's solicitor, gave evidence to the Health Select Committee, who say Mackintosh Duncan ......told us that of the many sets of eligibility criteria they have seen which are currently being used 'none of these criteria were in accordance with the Coughlan Judgement'.
The SHA have since told me that they meant their own Solicitors, Bevan Ashford. They were the LOSING Solicitors in the case. Pam Coughlan has never been 'involved' with them in any way and fully agrees with her Solicitor, Nicola Mackintosh, although she is apt to be more blunt and forthright. This is clearly a deliberate attempt to defraud and the matter is in the hands of Sussex M.Ps.
At the request of Bob Spink M.P., the Clerk passed my comments to the Select Committee which reported on 10th April. As well as Nicola Mackintosh, the Law Society and the Society of Solicitors for the Elderly told the Committee that everything being done was unlawful and the Committee commented - These are very serious charges which the Government must answer.
Giving evidence to the Committee the Minister, to my immense surprise, complained angrily that it was wrong to say old people had to sell their homes to pay for their care as the regulations were changed in 2001 so that homes are not required to be sold in their lifetime. I did not know that. In practice, invariably Social workers say, quite unlawfully, 'You must sell the home at once to pay for care'. A complaint to E.Sussex produced an evasive reply last Wednesday. This is again clearly a deliberate attempt to defraud and the matter is also in the hands of Sussex M.Ps.
I was interviewed by Channel Four news in their lead item on 10th April responding to the Select Committee report. The list of cases scrolled up the screen included all the Guillain Barre cases. Meridien followed it up. I referred to flagrant breaches of the Common Law, but one of the most disturbing things is the sheer turpitude of the administration of the NHS.
In Bexley in March they attempted to bully a very ill old lady into signing an agreement to pay contrary to the instructions of her legal representative. The situation is today greatly unfair to Doctors who are asked today to act as accountants and lawyers. They are asked to take massive quasi-judicial decisions which decide if the entire assets of the old, the sick and the infirm are to be expropriated by the state. This expropriation will protect their individual budgets.
Even more insidious is the diversion of those who need Nursing Homes into Residential Homes lacking the right facilities in order to avoid free care. The Select Committee contemptuously spoke of 'Finance Directors taking clinical decisions...... Decisions often driven by budgetary concerns ..... clinical decisions are overturned without explanation. This should not be allowed to continue'
So great is the concern that the Minister has agreed a major revision to draw up a National Framework. As a result of my evidence to the Select Committee, The Minister wrote to Dr Bob Spink M.P. on 24th Feb, 2005 'I ........would like to invite Mr Cole to respond to any future consultations on the subject of continuing care.' Bob Spink is now asking when I will be consulted.
Free care is being refused to Colin Mercer because, although totally disabled, his condition is not unstable or unpredictable. The Committee say ... all argued that the Coughlan Case would itself have failed to meet the requirements of the guidance on eligibility criteria, as Pamela Coughlan's condition was stable and predictable. They quote Nicola Mackintosh as saying Her particular needs are considerably less than the majority of residents of nursing homes. Yet the Court ruled she is entitled by law to free care.
Indeed, when Pam Coughlan followed me on Channel 4 news although tetraplegic and in a wheelchair she seemed to be living a vigorous life. This gives overwhelming force to the view that our members who are totally disabled are entitled at law to 100% free care. This I hope to develop when consulted by the Ministry.
Although early last year two marginal appeals for Disability Living Allowance failed, one on a split decision, the reapplications for cases we won in recent years have all gone through smoothly. However last month I went to Liverpool to appeal against the refusal of a reapplication for a young man who has Guillain Barre and is also suffering a severe reaction to the Acne drug Roacutane. Whether the drug triggered the GBS is under investigation.
An attempt two years ago to rescind the original benefit was ruled unlawful by the Chairman. Another panel member then described the Benefit Agency submission as 'a shoddy piece of work'. Perhaps because of this background, the Agency Manager unusually attended the new hearing.
It was clear from the outset that the Panel had decided on the documents that we were right, but as a courtesy asked the Manager to comment.
Her intervention was totally incompetent; asked about mobility, she quoted from the Doctor's report about care! We won easily. This does raise grave concern about election promises from all sides to cut the Works and Pensions budget by £2billion to finance bread and circuses for a hungry electorate. All the evidence I have is that the Ministry is understaffed, incompetently run and needs an injection of funds if our members are to receive justice.
The News of the World last Sunday talked of a 'crack down on scroungers'. They wrote 'Back . with a vengeance. Blunkett's first task is to get the workshy 1m jobs .. to end the gravy train'. By that they mean you. The main Aunt Sally is the £55 incapacity benefit. Far from being workshy, our members often ask me to support their efforts to resume their jobs under the Disability Discrimination Act.
At £55 a week reducing Incapacity Benefit is not going to increase the Treasury's pot very much. It is News International, the paper's owner, which is a particularly large black kettle. By using tax havens, they have paid no Corporation Tax whatever for the past ten years. The Editor of the News of the World is the nation's top scrounger.
Travelling on Guillain Barre business, I have discovered that late platform changes can be difficult even for the fit. As one change caused Mary considerable distress, I am now querying the legality under the Disability Discrimination Act of late changes which only the fleet of foot can manage. Waiting at Birmingham last month I noticed six very late changes in an hour. I suspect that the much vaunted increase in timekeeping is achieved by using modern computer controls in signal boxes which pass trains through stations quickly even if the passengers are left behind. I had to speak up for an unfortunate platform guard at London Bridge recently as an angry crowd shouted at him because nobody had got across from the original platform. Obviously the disabled could not have managed it.
A member in Cambridge was told that specialised ankle supports are NEVER supplied free. That is unlawful. Every health need must be assessed on is merits. There is no law which says any particular assistance must be provided in every case. The decision is a matter for professional assessment and cost can be taken into account, but to have a total exclusion policy is unlawful.
Reverting to free care, in preparation for any new Guillain Barre cases which may emerge I am helping a group of campaigners across the country who are flatly refusing to pay and urging the authorities to sue. Three appeared after me on Channel Four News. Nobody has yet been taken to Court. NHS Managers and Social Services dare not sue. They know they are breaking the law. This I will stress when consulted by the Ministry.
I find it very odd at the age of 74 that sitting in the corner of my bedroom with a modest computer I seem on the point of proving beyond doubt that a major Government policy is plainly unlawful, but then my legal opinion has so far been withheld from the Cabinet. I hope I will still be with you next year. Mary has long thought I will end in the Tower. She is now convinced it will be the axe.