from Robin Lovelock, editor of in January 2011: I recently received this article, written by 90 year old Tony Adams, cared for at home by his loving wife Doreen. Tony has been fighting for his legal right to 100% NHS funded Continuing Care. When I read the words below, I was struck by how Tony manages to highlight the injustice of what many thousands of others have been suffering - but to do so with such a wry sense of humour. Footnote in 2013: Tony passed away in February 2013. Love and Strength to Doreen and their family. To whom it may concern




Observations and frustrations regarding my several requests for an assessment for NHS Continuing healthcare.


Definition. Care extended over a period of time to persons over 18 years of age as a result of sickness/disability or accident.


I am an RAF veteran in my 90th year ill with motor neurone disease, diagnosed by Professor Logue at Maida Vale in 1973. There will be  many more frail, ill and vulnerable people, similar to myself,  some of whom were in uniform, years before the perpertrators of the dishonesty described in this article, were even born.


Understandably ill people must be assessed for this benefit (free care) but before an assessment is granted he or she is screened using a checklist and this checklist is the problem. It comprises 11 domains, 6 of which I detail below the other 5 being not applicable in my  case. It is the refusal to grant even an assessment on the flimsy grounds of the outcome of this superficial screening that is so unfair.


Let me list all 11 domains, they are:-


1. Behaviour. 2. Cognition. 3. Physological and emotional needs. 4. Communication. 5.Mobility. 6. Nutrition. 7. Continence. 8. Skin integrity. 9. Breathing. 10. Drug therapy. 11. Altered states of consciousness.


The checklist I maintain is a thoroughly dishonest and inappropriate document, designed to deny the patient a proper  assessment since, as in my case the checklist revealed 'no primary health need' how perverse!  Not only that, it dilutes, by dividing the illness by 11 so 100% becomes a mere 9% . Read again the 11 domains above, it reminds me of the ''small print''  a disreputable insurance company uses to avoid paying. 


The Primary Care Trust say, granting a proper assessment is not about diagnosis or illness. Isn't it?, I would have thought that would be the first consideration, but no, to add complications they say it is about the nature, intensity, complexity and frequency of Health Care Interventions, how anyone can possibly know these without first assessing beats me. Let us look at these health care interventions.


Healthcare Interventions.


Nutrition. Regardless of whether fed by spoon or p.e.g. the result would be the same, without food the patient would starve to death. So because of the patient's underlying illness, another indivdual is required to intervene. Likewise fluids, without which he or she would die of thirst. Why do hospitals provide 3 meals and 4 drinks daily and use healthcare assistants to feed patients who cannot feed  themselves?,  surely a most basic intervention.


Continence. Unless properly managed, water retention, an extremely uncomfortable experience could mean an ambulance dash to A and E, a day in hospital and catheterization for 5 days...Dr. Habib of Ipswich hospital will confirm. Here I mention intensity, what can be more intense than an urgent need for the toilet with 'no useable hands'?

Everybody knows the frequency varies with the individual and his or her intake of fluids.


Drug therapy. Of what use is medication the patient can only look at?  So the intervention of another person is again required.


Skin integrity. Another H.C,I. Who moves the patient's limbs at 1.a.m. 3.a.m. and 5.a.m. to relieve painful pressure sores, during the day as well. Why do hospitals use the Pegasus No. 1 mattress?   .


Mobility. This is the whole illness which spills over into several ''domains''  Take away the illness and the problem is gone but what does the checklist reveal? It reveals the patient has  no primary health need!  what then is an incurable, progressive motor neurone condition resulting in tetraplegia ? secondary? The reality is, the patient cannot blow his or her nose, remove spectacles and scratch that annoying itch and is helpless. 


Cognition. If the house were on fire at night I would be well aware but quite unable to get out of bed.


Using the Checklist.


A multidisciplinary team, sitting at table, carries out this screening i.e. a nurse and a social worker who merely ask questions and tick boxes, the patient is not examind in any way whatsoever, (imagine issuing  an M.O.T. certificate without examining the car?) . The PCT assertion the qualifying threshold is set low to ''include' 'is simply not true, the terminally ill would have difficulty qualifying, not my words. Using this toolkit Pamela Coughlan of the 'Coughlan Judgement' (a legal benchmark handed down by the Court of appeal in 1999) would not remotely qualify, again not my words.


 Neither is their assertion the checklist is 'Coughlan compliant', when it clearly is not.The fact is, it gave no indication of a health need when it is blindingly obvious to the layman or 'the man in the street', the patient has a major health problem. Note number 20  accompanying the checklist says ''There may be circumstances where a full assessment for NHS Continuing healthcare is considered necessary, even though the individual does not apparently meet the indicated threshold.'' but ignored.


Driven by the financial incentive, a proper assessment is denied so the risk of finding the individual is sick, is avoided. The individual is then left with the Local Authority for what in reality is asset stripping. They in turn say, that care charged for, is 'domiciliary care', which I do not receive and never have received. Domiciliary Care according to Collins is provided by Mrs. Adams through 24 hours.


Comments on the checklist from three independent sources.


1. ''....highlights the absurdity of the decision support tool and the checklist...''

2. ''....bizarrely and totally misconceived...''

3. ''....I doubt if the checklist is lawful as for instance it doesn't cover the section 21 test...''


Yet the PCT, The Complaints Dept., the SHA,  all use the outcome of this very doubtful, tick-box exercise, for all their decisions in the matter of eligibility for free care. Even the Ombudsman's office use the checklist result in their decision to come down on the side of the Suffolk PCT, after 'liaising with them' and 'using data supplied by them'. The Ombudsman's assessor used over 3 pages of foolscap just to say the PCT had used the checklist correctly and that comparison with Coughlan is inadmissible with the words  ' stressing that each case must be viewed in its own right' strange!!!  when according to the Court of Appeal judgement, anyone whose health condition is equal to or worse than Pamela Coughlan is entitled to NHS free care. The judge said care needs more than ''merely incidental or ancillary'' are the responsibility of the NHS.


The review team,  of the Ombudsman's office hardly comes up 'smelling of roses' when their 'Director of Outcomes and Learning ' ''undertakes to reply within 16 weeks, (4 months), brilliant!, should have been a plumber!. To be fair a reply arrived after only 3 months, the reply, after all that wait, "the case remains closed".  This, after I had supplied the 3 minute Coughlan video explaining how she feeds herself, demonstrates how she signs her name, dexterity using hands in the kitchen and opening the outside door. I can do none of these things. Pamela Coughlan receives free care, I do not!, how fair and reasonable is that?. I have Pamela Coughlan's permission to mention this.  


The 3 core principals of the 1948 Health Act.


1. That it meets the needs of everyone.  2.  That it be free at the point of delivery.  3. That it be based on clinical need, not the ability to pay.


Quote from The Health Select Committee.


17. We are shocked to hear some patients and their relatives are not offered any form of assessment for continuing care and subsequently  do not receive assessments because they are simply unaware that continuing care funding  exists and that they might be entitled to it. We do not think the onus should be on the patients or their families or carers to request an assessment for continuing care; all patients with continuing care needs should be offered an assessment automatically before leave hospital. Needless to say I was offered no such assessment on discharge from hospital.


Quote from the Law Society.


''Unless the legal position is fully understood and consistently applied, the core problems will continue and many vulnerable people and their families will continue to pay for healthcare which should be the responsibility of the NHS and free at the point of delivery''.




I first asked for an assessment in September 2009 but find I am up against a 'brick wall' of official intransigence. The reality, as I experience it, is grossly unfair, if it were not for my 83 year old wife, who is ill herself, struggling on, providing 24 hour care, I would need a care home and then who pays?, who cares?. The NHS officials, public servants, deliberately blind to what is reasonable and obvious, hiding behind 'guidance' of the ''National Framework'', which is just another excuse for failing to do their job as it should be done, that is, the care of sick people in a positive way and not wriggling out of their responsibilities.  


None of us have immortality, my year of birth was 1921, so by using delay, after delay, after delay, sooner or later the problem of granting an assessment will surely solve itself.


I find it sad that anyone be a party to this deception and injustice to an older generation of many frail, ill and vulnerable citizens, who created the NHS in the first place and are now treated so badly.


Tony Adams  23rd  January 2011.