Phil Shakespeare's campaign for NHS funded care for his mother is supported by an NHS Consultant, Dr David Jolley who is a psychiatrist of late life.
Dr Jolley regularly visited Pauline Shakespeare whilst visiting other patients living in her care home.
Although she was not a patient of his he knew her case well and he has strong views about the way the NHS is withholding fully funded care.
He was interviewed by Panorama's Vivian White.
VIVIAN: Why have you taken Phil Shakespeare's side in his dispute with the primary care trust over his mother, Pauline Shakespeare?
DR JOLLEY: My position is a professional one, and what I'm wanting to do is give, what I believe to be, an honest, professional opinion about his mother's condition, and her best interests because that's what I have to do as a professional.
VIVIAN: As I understand it, the argument of the primary care trust is that she has dementia before, and she has it now, but since she suffered a fall, she has fewer nursing needs now, than she did. So, from their perspective, whereas she was entitled to fully funded care before, now she's not entitled. I think that's their case. What do you think of their case?
DR JOLLEY: I do find those sort of interpretations very strange. As a clinician I see this lady as having a dementia that was present, is still present, will continue, and she will acquire more impairment between now and when she dies. A passing incident has been the fall. She's recovering from that but the overall requirements remain much the same. So, as a clinician, I stand back and I see someone who needed this form of care, still needs this care, and will need it, frankly, till she dies. And that's what I will wish to provide.
VIVIAN: Have they got a case or not?
DR JOLLEY: It's not a case which I understand, it's a dimension that's not mine. I'm a clinician, I see patients I deal with people. I think most ordinary folk will understand my perspective. It's not clouded by issues of finance, it's what is required by this individual. It might be medicine, it might be nursing care, it may be other sorts of therapy, and that's what I know about.
VIVIAN: Is that logic that the primary care trust have applied in this case an unusual one, or is their logic one that you've come across before?
DR JOLLEY: It's one that people are being encouraged to use. An approach that is preoccupied with finance, and there's also been educated by an idea that clinicians views should be set aside, or not taken as seriously as they have been in the past. There's a sort of suspicion that clinicians are not responsible. But, at another level, we're utterly responsible. We, we are the professionals involved with the care of patients, along with nursing colleagues and so on. There's a worry about postcode finance. You know, you might get a service in one place and not in another place.
VIVIAN: Are you suggesting that that reassessment of Pauline Shakespeare, that the new decision that she is no longer entitled, in the primary care trust's views, to full funded care, isn't actually driven by a clinical reassessment of her?
DR JOLLEY: The concern is that the main preoccupation is what is the best use of the money, or what is the best distribution of a limited finance. And my perspective has to be what's best for this individual. But taking into account that there is a limited purse. But once someone has been judged as to having deteriorated into this level of need, because of her progressive dementia, it's very unusual to feel that they can make a recovery sufficient that they should come out of that bracket. I think it's very important to have a longitudinal view.
Many of the people who are asked to make judgements, such as the ones you are describing, don't have any longitudinal knowledge, or any longitudinal commitment to that individual. So that's why I think the views of people like myself are important and worth listening to.
VIVIAN: Is Pauline Shakespeare getting worse or getting better?
DR JOLLEY: Over time she's progressively getting more impaired. That's the natural history of her dementia. She has done quite well in the nursing home that she's now living in, because the nursing staff, and the environment, has remained steady, people have responded to her, she's become known by them, and so, thank goodness, she's got a better quality of life than when she was first admitted, when she was more muddled and frightened, because she's become settled. That doesn't mean to say her underlying condition, her biological status, has changed, but she, she is now in a good balance. That's fine, and it should be maintained, it needs to be sustained like that.
VIVIAN: Do you think the perspective of the primary care trust, of the NHS in this instance, is unusual in your experience, or represents a more general problem?
DR JOLLEY: It does represent a more general problem, and it represents a setting aside of clinical views, and clinical assessments, in preference for a bureaucratic approach, which is about how to spend money, how to control the spend of money, so it is that people are not looked after as individuals with illnesses that have a long term cause, but just commodities that need to be seen to for a period of time. There's the fragmentation of care, the fragmentation of planning what's to happen, and fragmentation of understanding of what is the natural history, what are the natural needs of individuals. Now, I don't want to be unkind or unsympathetic to the people that find themselves in these positions. There's a major preoccupation with how much money is being spent, and so on. But in the end, I think it's counterproductive, because individuals are suffering, and I'm not at all convinced that we get better for the money out of this system.
People are spending a lot of time doing assessments that are nothing to do with therapy, but simply to do with the allocation the of funds.
VIVIAN: I'm sure that the NHS would say, that in this case, and other cases, the nurse assessors who do the assessment, are carrying out a clinical assessment. You're suggesting that it isn't a clinical process that they're engaged in. What do you think they're doing?
DR JOLLEY: I know many such nurses, and they are, by and large, smashing people. But what they're allowed is a one off picture of somebody at a point in time. What's very difficult for them is to have a longitudinal view. What people like myself, and the nurses who actually do the ongoing care have, is a better understanding of the long term picture. Who is this person, how did they come to be like this, and what's going to be their future? So I think what we have to say is very important. I mean, occasionally, perhaps we need to be checked, but I mean, we haven't any axe to grind other than wanting the best for our individual patients, and that is a reasonable thing for us to pursue.
VIVIAN: In your opinion, is the reassessment of Pauline Shakespeare, the decision that she's no longer entitled to fully funded continuing care, justified, or not?
DR JOLLEY: I'm puzzled by it. I hope that people will see that she requires ongoing care, funded in just the way that it has been. Because she hasn't suddenly got better. She's still got all those disadvantages, arising from the same illnesses. Thankfully she's recovered from the fall and the broken leg. That's the natural history of that pathology. But the other pathologies are still there, pursuing their natural histories, and requiring just as much input and support.
VIVIAN: As you know, the legal test as to whether you're entitled to free fully-funded health care by the NHS is meant to be whether you have a primary health need or not? The actual test in the criteria often goes to these words: unpredictability, intensity, complexity, stability of the condition. What do you think is the purpose of these words in the process?
DR JOLLEY: The words are being used so that it's possible to compare this situation with another situation. That's entirely reasonable. But the difficulty is they appear to be being used to ration situations and, and they describe individuals at points in time, and don't have a longitudinal perspective. So it is, as in Mr Shakespeare's situation, that it's possible for people to need health care this week and social care next week, and presumably health care again later on. And I don't think that's sensible when you have a continuity of pathology primary healthcare need that's producing the overall pattern of need.
VIVIAN: In your experience, is the Pauline Shakespeare case and the decisions that the primary care trust has taken in this case, which you find puzzling, which you disagree with, do you think that's peculiar to her case or do you think the same sort of thing happens in the continuing care system up and down the country?
DR JOLLEY: Up and down the country people are despairing or simply giving up and shrugging their shoulders. Older people, particularly older people with mental health problems are being dealt with in a scandalous way.
They are being pushed aside as if they are no longer part of our usual society, that they can no longer expect a fair deal from the health care system. If they have money then they should pay. But that's not right in my view. What's required is that whether you've got money or whether you haven't got money you get appropriate care for your health problems, whether their acute or long term.
For me it's a great tragedy because I've spent 30 years working with older people with mental health problems, particularly dementia, and in many ways we have made progress to improve matters for them, but this is a bizarre perversion of what we've all been trying to do.
And many ordinary people would say the same as I am now saying, because they've found that their parents, or their brothers or sisters are being dealt with in this way and people don't expect this to happen. It shouldn't be happening and I think all the authorities just need help in calming things down and getting back to proper common sense.