Examination of Witnesses (Questions 358
THURSDAY 26 MARCH 1998
MRS D HAMLIN,
MR B JONES
N YOUNG, MISS
C FERGUSON AND
MRS S WORLEY
358. May I welcome our second group of witnesses
and thank you for your very helpful written evidence and your
willingness to come before us this morning? May I ask you each
to introduce yourself briefly?
(Mrs Worley) My name is Sue Worley. I
am a district nurse by profession. I coordinate the evening district
nursing service, night sitting, Marie Curie and the Macmillan
Carers Scheme for the Borough of Solihull.
(Mr Young) I am Nicholas Young. I am the Chief Executive
of Macmillan Cancer Relief. I have been three years in post. Before
that I was Director of UK Operations at the Red Cross and before
that I worked for the Sue Ryder Foundation setting up new Sue
Ryder care homes. Before that I was a commercial solicitor.
(Miss Ferguson) I am Claire Ferguson. I am a research
associate working at Trent Palliative Care Centre in conjunction
with the Department of Palliative Care at the University of Sheffield.
We were commissioned by Macmillan Cancer Relief to evaluate seven
pilot carer support schemes and that is what we have been doing
for the last two years. I am here to present evidence on that
(Mr Jones) I am Brian Jones. I am the Chair of Community
and Health Services at the RNIB. My background is as an area manager
in social services. More recently, before I retired, I was Director
of Services for an organisation for blind people.
(Mrs Hamlin) My name is Deborah Hamlin. I am Assistant
Director at RNIB responsible for our health, social services and
local voluntary organisation services. Before I worked for RNIB
I was in NHS management for 17 years. I moved into the voluntary
sector nine years ago.
359. May I begin by asking the same broad question
as I asked the previous witnesses? You were here so you heard
the points I raised. Clearly we are looking at what has been described
as this "Berlin Wall" between health and social services.
It was described in the last session as a volleyball net basically
with the ball bouncing on either side and depending on pot luck
which side the ball went in terms of who paid for services. Do
you also perceive this division in the way it has been described
by previous witnesses and how does it impact upon the services
you are concerned with?
(Mr Young) May I start by painting a picture of what
it is like for a patient to be diagnosed with cancer because if
I do that members of the Committee will be able to see how important
it is that we get right the provision of care at home for people
with cancer. As anyone who knows someone who has been diagnosed
with cancer will know it has immediately a very profound effect
both on the patient and on their family; feelings of fear, shock,
anger, huge uncertainty and a terrific sense of urgency prevail.
There is pain from the cancer itself, tiredness, depression, a
sense of really being very ill indeed, coupled with the recognition
that one's whole life may change. There is a "cancer"
journey and it is a cancer journey in which the fear of losing
time, wasting time, not dealing with things quickly enough, is
very, very real. There are tests to be gone through, there is
the trauma of diagnosis itself, there is treatment which may go
on for a considerable time, questions about whether that treatment
will be successful, the possibility of relapse, the need for palliation
or control of pain with the possibilities of death or a complete
cure. Throughout that journey the needs of the cancer patient
and their family are complex. There are obviously medical and
nursing needs but there are practical needs too, social needs,
emotional and psychological needs that all need to be covered
and these needs change throughout the journey. A lot depends on
the type of patient and the particular cancer they are facing.
For example, an elderly lung cancer patient will have the frightening
symptoms of the disease itself to cope with, breathlessness particularly
is a really very serious symptom of lung cancer which people find
very, very hard to cope with( not just patients but Gps too).
The treatment for lung cancer and indeed for many cancers is very
unpleasant and itself leads to very nasty side effects. There
are practical needs for an elderly person with lung cancer, how
to cope with meals, how to deal with housework, how to get up
the stairs, down the stairs, how to get to the toilet, how to
cope with the bath. There are financial needs. They may have to
travel some distance to get to treatment or to see their doctor.
They will need extra heating, they will need extra clothing, maybe
extra equipment. Overlaying all that is the emotional worry, facing
death. Survival rates for lung cancer are very low; only seven
per cent of people survive longer than five years with lung cancer.
All this of course is coupled with a concern for the carer, the
partner who will probably be elderly themselves and will also
possibly have care needs. It is not just older people who find
it difficult to cope with cancer. A young woman with breast cancer
or colo-rectal cancer will have the symptoms of the disease to
cope with and the effects of the treatment, nausea, diarrhoea,
burning, but will also have the practical needs of the families
to consider, children, meals, housework, her own personal needs,
financial needs, loss of a job, loss of that vital income to a
family, the need for transport help and of course the emotional
worry, the worry about the partner and so on. What I am painting
a picture of is a very, very complex situation, a very serious
situation for the person faced with the diagnosis of cancer, We
will say and I hope our evidence will show today that there is
indeed a "Berlin Wall", although we would use a different
analogy, different from the "Berlin Wall", different
from the volleyball. I give you the analogy of the pinball machine.
Often a person with cancer feels like the ball in a pinball machine
being pushed from one carer to another person to another office
to another hospital to another surgery to another situation, out
of control and needing to gain control so as to be able to cope
with the emotional and physical onslaught of the disease.
(Mrs Hamlin) To use yet another analogy, we look at
this interface rather as a yawning chasm than any of the sporting
analogies which have come up so far. There is a unique element
in crossing this chasm for people who lose their sight or who
are visually impaired. That is that their support in the future
depends on the registration process which of course starts at
the hospital with the consultant ophthalmologist. Anything which
goes wrong with that process, and as you will have seen from our
description of the ophthalmic journey there are many places where
it can go wrong, actually makes the yawning chasm even deeper.
This is a unique situation and whilst registration is absolutely
key to blind and partially sighted people because it is still
so often the trigger for services, problems around that area do
actually make the chasm vastly deeper than it already is. Also,
you were asking your previous witnesses about where health ends
and social care begin? In the case of blind and partially sighted
people, there is probably a more definite delineation because
there comes a moment when the consultant ophthalmologist says
he can do no more, he is discharging them and they are then into
the pit in many cases. We see it as a pit not a "Berlin Wall"
and we see it as a very, very major issue.
360. Taking the last analogy of the chasm, none
of you is suggesting we actually fill in the chasm by organisationally
blending the various groups. I am particularly interested in your
background, Mr Jones, because obviously you have a similar background
to my own. The witnesses previously picked up on the changes which
took place in 1974 for example which moved certain chunks of community
health services away from local authorities. Have you thought
about whether significant organisational change along the lines
argued by our witnesses from BASW last week might address the
concerns you obviously pick up on a day to day basis?
(Mr Jones) It is fraught with difficulties in some
ways because existing structures are already in place. Perhaps
if we were looking at the ideal we would certainly wish that there
were one multi-disciplinary team looking at what has been referred
to as the ophthalmic journey, that is that a person who goes to
their GP or goes to the local community optometrist with some
sight difficulty is then referred through and the whole team is
involved in this process of examination, assessment and rehabilitation.
What seems to be happening in the field is that some of the chasm
which is occurring is now being taken by the voluntary sector.
In looking at the kind of ideal we would be looking at a partnership
which involved both the statutory and voluntary sector. Yes, it
would be much clearer were there an ophthalmic team who dealt
with this from assessment to care. One of the difficulties at
the moment is bridging that gap where some of the eligibility
criteria are different and certainly the priority system is very
different, which is the thing which worries us.
(Miss Ferguson) Could I go back to the original question?
We interviewed all the coordinators and managers of these seven
schemes at the beginning of the service and we asked them why
they felt an additional service was necessary in their area. They
all said that there was a deficiency in the services which existed
and there was a need to plug that gap until statutory services
could be put into place. Nick has talked about the importance
of time for people with cancer. We discovered that in general
it took between five and 26 days for a social services package
to be put together and an assessment to be carried out. For somebody
who needs to leave hospital in order to die at home, which may
be their wish, five to 26 days is often just too long. What the
Macmillan Carers Schemes have done is quickly put in place services
which will fill that gap until the statutory services are put
into place. You asked how this so-called divide can impact practically
upon people's experiences and one of the manager's gave us a very
good illustrative example of this. It was the case of an elderly
woman who was a very private person and who really did not want
to have to accept help. She did accept that she needed two things.
One of them was help to change her duvet cover and the other was
somebody to hoover her bedroom. It was seen that social services
could change her duvet cover because that was personal care but
they would not do the hoovering. A Macmillan carer went in and
did both the personal care and the hoovering. She got one person
into this private woman's home to do both the tasks. That is an
example of where this service can straddle the health and social
service care divide by offering both what are perceived to be
health services and social services.
(Mr Young) Patients really do not care where this
help comes from or who pays for it. They really do not want to
know, they do not want to be involved in the debate. What they
need is help, mostly to stay at home. Seventy-nine per cent of
cancer patients want to live and die at home. Currently only about
29 per cent of them achieve that and that is mostly because the
facilities do not exist within the community, be it from health
or social services, to provide the support and that is where I
sympathise very much with the volleyball analogy; the support
which keeps them up in the air, keeps them at home simply does
not exist. Yes, of course we must sweep away any "Berlin
Wall" which exists but that does not in our view have to
be achieved by wholesale huge organisational change for organisations,
particularly in the case of the National Health Service who have
already been through endless cycles of fundamental changeover
in recent years. It does require really good teamwork and we see
examples of really marvellous teamwork between health and social
services in some parts of the country and absolutely abysmal teamwork
in others. The argument must be: if it can work in one place,
why on earth can it not work everywhere?
(Mrs Worley) On a personal basis, my responsibilities
are for nursing services as well. Where I work the multi-disciplinary
teams have worked exceptionally well. I was one of those coordinators
who from other services could show all the gaps which were in
place. What we are finding is that my responsibilities are for
a particular borough and you only have to go across the road and
go into the Birmingham area and find that because of their criteria
it is so different. We are provisioning care through the Macmillan
Carers Scheme to look at those stopgaps. The other issue is about
the health and social divide. Because of the nature of cancer
it flips from one day into the other. It is the fast response
we are providing which has provisioned that care. Mentioning the
duvet and the vacuuming, there are times when certain tasks or
procedures may only be one-offs and if you are waiting for social
services to implement a system they are not going to do one-off
situations. This is what we have been able to do.
(Mr Jones) One of the difficulties that is arising
and perhaps is increasing the divide is a lack of understanding
of the roles of the various workers in both the health and social
service teams. It seems the ophthalmologist or the social worker
do not get together sufficiently and that perhaps training across
the board would certainly alleviate some of the difficulties which
arise. The other is obviously the recognition of sight loss as
a serious disability. A view seems to be taken that when an older
person is losing their sight it is recognised as being part of
the ageing process and we do not accept that. We feel there should
be a much higher priority and greater recognition of sight loss
as a severe disability.
(Mrs Hamlin) You were talking earlier about whether
it is necessary to completely restructure everything to make things
better. The point I wanted to make was that there are some quite
simple things which can be done which would improve the situation
enormously. For example, we have developed the concept of the
eye clinic liaison officer who is in an eye clinic, whose job
it is actively to get the bridge built across the health/social
services divide. Those sorts of posts, coordination, liaison posts,
can make an enormous difference at the operational level. It just
means people working together in teams and in partnerships. Actually
we in the voluntary sector are providing one in several acute
hospitals but funded by social services. There are very good examples
of partnerships, simple solutions which make an enormous difference
on the ground.
361. I was very interested in your comments
about needs assessment and not relying on the registration process
before you start looking at meeting need. For my benefit, could
you explain whether registration only occurs once the sight loss
is stable and permanent?
(Mrs Hamlin) The moment when registration occurs will
vary. It may be that someone's sight is lost or severely diminished
but that a consultant may say he will keep an eye on them for
a little bit longer and they should come up every six months for
a check. This has two effects. One is that it is prolonging the
time before people obtain services, but it also has the effect
of perhaps prolonging hope that something may happen to make the
situation better. It is variable. The point about early access
is that the longer someone is trying to cope with losing or lost
sight, the more their mobility is affected, their confidence levels
are affected. If they are waiting for registration which may be
two years after they first go to the consultant, you already have
someone with loss of confidence, with possibly severe emotional
needs, with practical needs which have not been met and with social
needs which have already had two years of deterioration. What
we mean by that comment is if someone goes to a GP and says he
does not think he is seeing as well as he was and the GP says
he had better go to see Mr So-and-So at the hospital, but at the
same time, because that person actually cannot see very well,
as in one authority we are aware of, it should be possible for
a referral to social services then. In other words referring on
the basis that the person is in need of assistance then rather
than waiting perhaps for two years possibly, 18 months to two
years, for registration to take place. We are not saying let us
get rid of registration; we are not saying that at all. We think
it is very important but we would like to see service on the basis
of need, not just on whether or not someone has gone through the
362. Is there anything which stands in the way
of that process happening?
(Mrs Hamlin) Not really. May I quote Hampshire County
Council and Southampton and Portsmouth? There is actually a referral
process which GPs can use, there is in fact a proper referral
form which is just referral to social services, request for an
assessment and services for a visually impaired person. That is
nothing to do with whether or not someone is registered, it is
because you as a GP think this person may need some support. It
is very varied.
363. Do you think it is possible to have nationally
agreed criteria for that?
(Mr Jones) It is certainly possible. The registration
process anyway involves an ophthalmologist because it has criteria
in assessing the sight of that person, by measuring their visual
acuity, by the chart means and taking into account their fields
of vision. That would not be a difficulty. One of the difficulties
in the process working is perhaps ignorance . GPs are perhaps
not keen to refer direct to social services for someone they appreciate
has this kind of loss of sight but it may not be taken to be severe
enough to need rehabilitation. Yet we know that the person's loss
of sight is very significant because 80 per cent of the information
we receive is by sight. We are also talking about people who may
well have a range of other disabilities and the multiplying effect
of that if you have lost your hearing and are losing your sight,
or loss of mobility and you are losing your sight causes great
difficulties. We know people with learning disabilities and sight
loss who have great difficulty and yet are not referred either
in the way we are suggesting from the GPs to social services or
even through the registration process.
364. The first question I actually asked was
whether the sight loss has to be permanent. If somebody is on
a waiting list for a couple of years for removal of cataracts
can they be registered during that period of time?
(Mr Jones) They can if it is seen to be a disability.
Obviously local authorities have a responsibility to provide the
service anyway, regardless of the registration process. Yes, it
needs to have that period of time. These days cataract removal
can take place fairly rapidly and may not be a cause for registration
or for resulting blindness.
(Mrs Hamlin) You were asking about eligibility criteria.
One of the problems is that obviously they vary and that local
authorities do not regard vision impairment sometimes as a disability.
We believe that under the definitiongoing right back to
the National Assistance Act 1948someone who is blind or
partially sighted is disabled fullstop. Therefore they should
be entitled to community care assessment. Because of the tightening
eligibility criteria within authorities and the fact that these
criteria are very much based on perceived risk, then blind and
partially sighted people are falling down the priority lists all
the time and the tighter the criteria get the more they are falling
down on priorities and therefore not getting assessments and not
365. In a sense is that not partly a consequence
of the procedures for registration? When a registration for partially
sighted people or blind people is passed through to local authorities
there is a procedure there with the forms passed through. Does
that not in a sense lead to less recognition of those people who
have not gone through the registration process?
(Mrs Hamlin) Yes, it could do so in that registration
means somebody has a chit; not that the BD8 form arriving at the
local authority is necessarily a guarantee anything will happen
very quickly, in fact it is often not the case. On the question
of eligibility criteria, the question of risk is one which concerns
(Mr Jones) People do use it as a guide and it certainly
triggers services; they use it as a guide for service provision.
366. Do you not think there should be something
slightly more flexible than that sort of very formal process?
Do you think opticians have a role in liaising with social services?
(Mr Jones) The community optometrist is obviously
a referral agent; they are the person, along with the GP, to whom
people go first when they begin to experience sight loss. What
we are concerned about is also eye disease and the optometrists
are certainly not skilled in identifying eye disease. In our ophthalmic
journey and certainly within our registration criteria we would
always want the ophthalmologist as the consultant to take part
367. Sorry to persist but it might be quite
helpful if we could just explore the relationship you are proposing
between registration and assessment in relation to need. In other
areas we have started to talk about national eligibility criteria
which are not the same thing as registration but you can see how
some of the issues which arise from it which you are describing
would arise if we were to go down the path of national eligibility.
Perhaps you could just explain to me. Under what circumstances
does registration lead to given services? Are specific requirements
laid upon local authorities which relate to registration and how
far are local authorities meeting those or varying from them?
(Mr Jones) If a person had a permanent substantial
disability then they would be eligible for a whole range of services
as a person with a disability. There are certain service provisions,
particularly local authority ones, to do with benefits and to
do with radio licences and other things which blind people would
get as a result of registration but that is over and above what
the expectation would be that the local authority would provide
for all people with disabilities.
368. If one were to go down the path of assessment
in relation to need, what value then does registration have if
local authorities were genuinely, let us say for the sake of argument,
and in a timely fashion pursuing an assessment in relation to
need and providing services based on that assessment?
(Mr Jones) Because it gives a more accurate assessment
of the vision both medically and functionally and as far as low
vision services are concerned, there is not a great deal of point
in assisting a person if you have not first ensured that they
are making the maximum use of the sight they have. My sight would
be very poor without this monocular. Therefore it opens up whole
possibilities in the rehabilitation process of mobility or reading,
or being able to access ranges of services in museums, libraries,
everything else. If we ignored the registration process then we
would miss a great deal of information regarding the ability of
that person to function, apart from the danger that you also might
miss some disease which might be there and could be rectified
by surgery or treatment.
369. I am interested in the involvement of users
and in particular how they should be involved in planning, delivery
and monitoring of services. Could you explain to the Committee
what mechanisms you think are needed to get users involved and,
where you think users are most effectively involved in services,
what makes that a success?
(Mrs Hamlin) The emphasis we would pick up from your
question is the whole matter of involvement. We believe that consultation
must have involvement too, by which we would want to see active
and ongoing user views coming into services and influencing services.
There are various different models of user consultation but one
of the problems which affects blind and partially sighted people
getting involved in the consultation exercise is getting the information
as to how they can be involved, where they go for a meeting, when
the meeting is. Authorities will say they are going to consult
but then they do not actually make the effort by using alternative
media to reach people who cannot necessarily access newspapers
for example. We should like to see user groups perhaps which could
be selected from patients in an ophthalmic outpatients department
being formed into an eye clinic user group. We should also like
considerably more emphasis across the board in all services on
the provision of information because people cannot get involved,
they cannot meaningfully engage with the consultation process
if they do not have information about their eye condition for
example, about the services which are available and also on general
issues. We would want to see accessible media available to help
people get involved. We are also concerned about the hard to reach
groups such as the ethnic populations for some of whom sight loss
is a major stigma. We believe that special efforts should be made
to enable them to access services, let alone getting involved
in consultation. Lastly, we should like to see far more awareness
in staff both in the hospital setting and in the social care setting
of the needs of people who are visually impaired and the needs
of the harder to reach groups, the ethnic minorities and unregistered
visually impaired people.
(Mr Jones) The concerns are that people can very much
have more direct involvement in the provision of services. There
are some very good examples but until there are more people employed
in the services for a start who have sight loss and until you
have some kind of ophthalmic user committee which has some clout
we may have great difficulties in changing the whole environment.
I was amazed the other day to go to a very new eye hospital which
had taken users' needs into account in the development only to
find very large numbers for certain things but very small print
on the actual signing. They had obviously done the exercise but
it had not had the impact I am concerned about.
(Mr Young) Could I echo the point about the importance
of user involvement and user empowerment? This applies equally
to people with cancer. There are two ways to improve services.
One is top down, improve the delivery, more doctors and more nurses
and more social workers. However, we often neglect the bottom
up method of improving services by giving people, people with
cancer, people who are blind, the power, the information they
need to access the best services. Whilst I have every sympathy
with what Dr Brand was saying about the need for services to be
responsive at the local level and for services to be very local
in their flavour, the fact is that the more local the flavour
is, the harder it is to get information and advice to patients
about their rights, about the sort of services they should be
demanding, about the minimum standards of care they are really
entitled to. I see this as a very important role, certainly that
the voluntary sector plays but actually the statutory authorities
could play as well in terms of making sure that people know what
is available, how to access it, what the standards are, how they
should complain, what they can do to help themselves.
370. You provided us with a paper on your carers
scheme and the MORI survey attached to it. I wondered why you
thought the MORI survey found that there was such an unmet need
for the service; the fact that there is an enormous gap there.
What do you think are the barriers which prevent such a service
being provided by health and social services in whatever balance
or do you think that your scheme provides something which health
and social services cannot provide? Given your experience of the
carers scheme, what advice would you give to us or to Government
in terms of how nursing and domiciliary social care should be
(Mr Young) You ask first of all why we think the MORI
research showed that there was such a need. Certainly let me say
that the MORI research was very thorough; we looked at about 8,000
households around the country in more than 250 constituencies
and then conducted nearly 1,000 in-depth interviews with patients
and with their carers to look at what their needs were first and
foremost and then how it might be possible to meet those needs.
The first point which came up was, as I said at the beginning,
that cancer patients have very complex needs. It is very easy
to see the needs of a cancer patient in terms purely of their
medical condition. That was the first point: complex need, very
easy to pigeonhole the patient as a medical case and nothing else.
The other most important aspect of need that came up was that
because of the pigeonholing as a medical case, the social needs,
the practical needs, were often ignored. Cancer patients themselves
were disabled in terms of coping with life because of the fact
that their practical needs were not being met. If the practical
needs could have been met, they would have coped with the disease
much more effectively. The key issue for cancer patients is how
they can cope with their illness, how they can be enabled to cope
with their illness and keep on living, keep on running their family,
keep on running their life. That issue is not addressed by high-tech
medical care. There needs to be much more low-tech and often very
low-tech practical care as well. That is where the Macmillan Carers
Scheme has come in. It has crossed the divide, it is very closely
linked in with the health services and in most of the schemes
is actually run from the health trust but it links right across
the whole spectrum of care and covers particularly the practical
and emotional needs which really do help the patients themselves
cope with the illness.
(Miss Ferguson) For a lot of the time what the Macmillan
Carers Scheme offered to the clients was respite for the informal
carer and that was one of the gaps which was identified in the
MORI survey which is really important. It is about the social
aspects of care, the practical things that people really need
which are not being provided at the moment. May I say a little
bit about what the carers schemes actually do? For six months
we monitored the Macmillan carers who are the workers who go out
into the homes and we asked them to tell us what they did each
visit. We have data for over 6,000 tasks on that. The main things
they did were listening and talking, being there in the home as
general support, often help with refreshments, helping people
to get to the toilet and tidying up. Those services very often
are not available from anywhere else. The advantage of the Macmillan
Carers Scheme is that it is offering social care and practical
care within a healthcare framework. It is being coordinated by
health professionals, district nurses and Macmillan nurses. It
can be detrimental to have people offering social care from a
social care environment who perhaps do not know the implications
of cancer and how that can affect clients and their informal carers.
That is the advantage of the Macmillan Carers Scheme: it is offering
social care within a healthcare framework. The problem these seven
schemes had and the problem that fledgling services do have is
when they come to try to find funding they have to orientate themselves
either towards health services to get health service money or
social services to get social services money. The strength of
this scheme is that it straddles that divide. That means that
they will not get funding from either the health services, because
they are too social, or social services because they are too health
orientated. That is where the "Berlin Wall" suddenly
becomes very apparent.
(Mr Young) That has been a real problem for us. We
had some funding from the Department of Health to help us set
up these schemes which was great. We are now funding them ourselves,
save in two cases, because we simply have not been able to persuade
either the health authorities or social services to pick up the
funding. The way we operate all our services is that we will pump
prime but we then want health authorities to pick up the funding
and continue the services thereafter, literally so that we can
move on and meet new needs in new ways. It has posed a real dilemma
for us. Claire, David Clark and her team from Trent have presented
us with an extremely positive evaluation of these schemes. They
really are meeting needs in a very practical simple and, could
I emphasise, fast way but we cannot get funding for them. We are
faced as an organisation with a dilemma of whether to say we cannot
get funding so we pack up and that is it, the schemes fold and
we do not provide any more of them, or do we as a voluntary organisation
have to find the money ourselves somehow. That is a major implication
because you are talking tens if not hundreds of schemes which
would be necessary to cover the country. Whilst we run them as
cost effectively and as cheaply as possible, and in Sue's case
she is actually experimenting with the use of volunteers, nevertheless
the cost implications are significant of maintaining them in perpetuity
which we would want to do.
371. What you have described, if I have this
right, is a social care provision provided from a health service
angle. You provide a seamless service as far as the patient is
concerned. You talked about the funding problem and it not falling
into anybody's particular pot but do you see that as a model that
perhaps we should be picking up?
(Mr Young) Yes, I do; I do very much see it as a model.
It is a very exciting model, it is a model which very much appeals
to the patients because they get seen immediately, they get care
immediately and they are just not bothered where it comes from.
What they see is an organisation providing and meeting their needs.
(Mrs Worley) Chatting to the users of the service,
it is also that link to access them into other services as and
when they need them. The other thing which is very much about
the Macmillan Carers Scheme, bearing in mind that we work alongside
all the statutory services and also the voluntary sector, is that
this particular scheme gives time, which is very important to
patients and carers, in a very cost effective way. Other organisations
have to limit the time they can actually give. What we are doing
is looking at what the patient needs and also their . Accessing
the Macmillan Carers Scheme and do whatever their needs keeps
them going. The time we are giving to them is allowing the patient
carer to get on with what they are doing and still provision their
own free time. I can describe to you many cases which are linked
with social services as well where social services have come back
to me and said they believe that if the Macmillan Carers Scheme
had not been there then their situations would have folded and
the patient would have had to go off to the hospital, hospice
or nursing home because the patient carers would have had to say
they could not do any more.
(Mr Young) It is important to emphasise that in the
Solihull scheme which Sue Worley runs 98 per cent of patients
over the last 12 months have been able to carry on living at home
and have died at home and that is a very significant figure. The
average across the country is that 70 per cent of patients do
not actually succeed in that. We have literally been able to turn
this round by providing very, very simple very practical care.
The other important factor of what you do Sue is that you coordinate
a number of services.
(Mrs Worley) Yes, I coordinate in a sense out of hours
nursing services and I am a district nurse. This health and social
divide frustrates me but because of what we have been doing within
Solihull and having a very good multi-disciplinary team with social
workers with whom we have worked very hardin answer to
one of your earlier questionswhat we have been able to
do because we are seen to be effective, just myself and a full-time
secretary, my senior manager has actually won a contract with
Social Services with young disabled and we are now going to be
running home care services alongside nursing and we will be able
to slip in and provide services to suit patients needs. That is
a sign of the way we are actually going forward and how we are
working. Mr Young mentioned that we are the only scheme at the
moment who are using volunteers. We have had two volunteers who
have worked with the scheme for the last 18 months and it has
worked very successfully. We have another seven who are coming
on board. As you can see, we are trying to stretch that pot of
money which is there at the moment and also trying to see that
the volunteer side is very much taking up part of that social
side as well. May I just say that the Macmillan Carers Scheme
is helping patients? More patients are coming out with more complex
machinery and Macmillan carers are actually helping to assist
alongside the district nursing profession out there and the social
services as well.
(Miss Ferguson) May I emphasise again the notion of
continuity that the Macmillan carers do offer? Often a Macmillan
carer went into a home originally to do something like washing
or ironing. However, because they are going in on a weekly basis
perhaps over a number of weeks the clients do build up trust in
the Macmillan carers so that when the client comes to dying or
is very close to the point of death the Macmillan carer is there
as a trusted person who can then move in to do more of the personal
care tasks and more intimate tasks because the family feel completely
comfortable with that. That is where the scheme really does emphasise
the quality of life of those people as well.
(Mrs Worley) What we are doing is asking the user
what they want not what we necessarily as a service can provide
for them. That very much links on to the philosophy of cancer
(Mr Young) Some of those services would be services
which would not have been covered by social services, very much
emotional, practical, companionship almost, which one accepts
would be completely outwith the remit of social services but which
are nevertheless incredibly important, particularly for people
facing something as frightening as cancer.
372. The evaluation of the pilot schemes clearly
is identifying enhancements to services which are provided but
also you are identifying changes in services which are required,
that is that 20 per cent of patients may not require hospital
admission and so on. Have you therefore pursued the evaluation
to a resource evaluation, whether more resources are consumed
through this process in total or whether the resources which are
consumed are in fact not necessarily greater but are different
and therefore you can see where some of the beneficial resource
implications might point to the way in which resources could be
(Miss Ferguson) We have not done a cost analysis of
that process but what I can say is that one in five of our informal
carers said that the Macmillan Carers Scheme did prevent a hospital
admission and Macmillan Carers Scheme support is cheaper than
a hospital admission.
(Mr Young) Ninety-eight per cent of the patients were
enabled to stay at home and in nearly half of those cases the
judgement of the professionals involved in the cases was that
were it not for the Macmillan Carers Scheme they would have ended
up in hospital. The problem is that the savings then are in the
health pot, the costs may well be in the social services pot.
It is quite difficult getting the money from one to the other.
(Mrs Worley) Another classic example was a hospice
which reduced its number of beds. Other services were finding
they were getting more patients in the community and all of a
sudden we were not getting as many. We were wondering whether
this was just the way cancer goes. When I did some research on
it, I found it was interesting that in the case of a lot of patients
from the hospice the professionals were suggesting that as there
was not that 24-hour care out there it would be advisable for
the patients to go into a nursing home. What we found in the last
18 months was that the Macmillan Carers Scheme has actually enabled
those particular clients who the professionals said needed to
go into a nursing home not to have to.
373. I should like to take you back. You were
saying that the pilot schemes are good, get a lot of support,
and yet when it comes to getting the pickup of finances they get
stuck between the two organisations. The big picture solution
would be that there should be one organisation and yet we are
picking up not only from here but from other witnesses little
support for that. I want to push you on this. Is it just that
nobody can face a reorganisation and all the trauma that is involved
with the people providing the services or is it that we have to
recognise that the battles between the services have to be fought
and we need to keep on fighting those battles and that is the
price we pay for having the advantages of those two systems? You
did briefly mention the evidence of Northern Ireland. Do pilot
schemes get picked up more easily when they get started in Northern
(Mr Young) We do not have one in Northern Ireland.
Give me a year or so and we will tell you the answer to that.
As I am not employed in either health or social services it is
easy for me to sit back and say this is what they ought to do.
It does seem to me that there has to be a strong argument for
some kind of joint pot that can be used to provide care for people
whose needs clearly span the "Berlin Wall". Whether
that requires huge organisational change, I do not know. I cannot
see why it should. I cannot see why it should not be possible
for both health and social services to recognise that there are
patients whose needs span both, therefore they both ought to be
chipping in to cover the costs of looking after them.
(Mrs Hamlin) May I add something on the Northern Ireland
situation? We have a service in Northern Ireland for which I am
responsible. There is no doubt that the combination of health
and social services there has made for more effective liaison
but we have to remember it has been in place now for about 20
years. It is worth noting that when the purchaser/provider split
came and the trusts started developing, they started to re-separate
again, so there were health and social services trusts. However,
they are now merging back again and there is some evidence starting
to come that indeed the closeness of the relationship or the amount
of separation does impact very directly onto the service which
users get. Certainly for the voluntary sector providing service
in Northern Ireland it is a completely different interface from
on the mainland.
(Mr Young) In the two pilot schemes where we have
been able to arrange pickup funding, in both cases it comes from
the health authority.
(Mrs Worley) The other thing is that when I took up
my post five years ago I was working with services which were
jointly funded and there was never a problem. As a basic district
nurse I wonder why that is not happening now: it is because it
is the policy of that area that they do not really like joint
funding now. Joint funding has worked extremely well.
(Mr Young) That is the point: it does work. In some
areas it works perfectly well so why not everywhere.
374. I am very interested in your Solihull scheme
because when you concentrate on the patient the barriers are not
as great. We have had a lot of feedback about the difference in
attitude between social workers and health professionals and the
need for more joint training to understand each others' problems
better. How important do you think that joint training is and
how do we best achieve it?
(Mrs Worley) It is actually very important. We have
had many social workers who have not fully understood cancer and
the cancer journey, so we have set up informal monthly get togethers
as and when needed, because we try to make sure we are not going
to meetings all the time. The social workers join in on the training
we do with senior Macmillan nurses and that has been picked up
by many and we have seen that as a great way forward and how the
social workers can pick up. For us as healthcare professional
as well we need to understand the social care side as well.
(Mr Young) We certainly mourn the loss of the hospital
social worker. There is a huge decline in the number of social
workers working from hospitals and that has very adversely impacted
on the understanding of the needs of cancer patients out in the
community; community social workers do not receive special training
in cancer care and it is a specialism like everything else. Macmillan
has funded a number of specialist cancer social work posts and
they have been very difficult to maintain simply because colleagues
do not understand the value of the specialist cancer social worker.
At least in two cases the appointments have collapsed simply because
they were not used properly and ended up just doing general social
375. On that issue of the loss of hospital social
workers, presumably you are implying that you disagree with the
changes which took place in 1974 when the hospital social worker
was transferred to a local authority social services, albeit still
based in hospital. Would you prefer to see the hospital social
worker actually employed by the hospital?
(Mr Young) There are many benefits to it. It does
mean that within the hospital there is somebody who understands
social work and the needs of people who need social care, and
those people are able to carry their knowledge of hospital and
medical needs out to their colleagues in the community. It is
somebody going through, over or under the "Berlin Wall",
which does not exist now.
376. Do you think there ought to be a module
of common training between social workers, nurses and doctors?
(Mrs Worley) Yes, I do; especially doctors.
(Mr Young) Yes; very definitely.
377. It is interesting how the voluntary sector
seems to be able to straddle this attitudinal divide and the statutory
organisations seem to be hopeless at it.
(Mrs Worley) In Solihull GPs have been extremely interested
as well. A lot of GPs do not come to meetings but it is surprising
how this particular scheme in Solihull has actually drawn us all
together and we straddle all the divide.
378. I am sure your meetings are not at nine
o'clock on a Monday morning.
(Mrs Worley) No.
(Mr Young) It will be interesting to see the impact
of the NHS White Paper in this whole area. Obviously the emphasis
on the primary level is in many ways very positive although the
great challenge is going to be to ensure that people working at
the primary level in our case have the knowledge about cancer
which they are going to need. Also, the recommendation that local
authorities need to be involved in the drafting and preparation
of the health improvement programmes for each area is absolutely
vital and if it is closely monitored and if it is made to happen
that will start to ensure there is more of a dialogue and more
involvement of both sides of the wall in providing care.
379. Do any of my colleagues have any further
points to raise? I am conscious Ms Hamlin wanted to make a final
(Mrs Hamlin) I wanted to build on that and say that
we agree entirely about the need for training and understanding
but it is probably crying in the wind when actually the big problem
is cultural and how we attack this one no-one knows. The medical
side of the divide regards so much of the work done on the other
side of the wall as rather woolly and difficult to quantify.