Written evidence from Parkinson's UK (COM
64)
EXECUTIVE SUMMARY
— Carers have not been given the consideration
they deserve in this white paper. They play a huge role in delivering
health and social care and need to have a central place, with
patients, in the new system.
— More detail is needed on how patients
and carers will be included in GP consortia. Their place in commissioning
needs to be an essential part of the new system and not just a
token add on. We would like to see patient and carer representation
on the boards of GP consortia.
— There needs to be patient and carer representation
on the NHS Commissioning Board.
— Workforce planning is not addressed in
the white paper. As this was previously part of the strategic
health authority's role we recommend the NHS Commissioning Board
takes over this responsibility.
— More detail needs to be given on the
NHS Commissioning Board. We think that there should be devolvement
to at least eight regional bodies.
— Quality indicators on neurological commissioning
need to be produced urgently to fill the gap left by the National
Service Framework for long term neurological conditions. Unless
this happens, neurological services will deteriorate.
— Evidence based quality indicators need
to be requirements for commissioning. This will give patients
and carers entitlements to good quality health and social care.
— There need to be sanctions and levers
in place to protect services in the transition period. As it currently
stands, there is hardly anything to steer commissioners for neurological
services. These services are not strong enough to survive without
support over the next two or three years.
— Local and national HealthWatch need to
be independent from the bodies they are monitoring.
— GP consortia need to be coterminous with
local authority boundaries if there is to be integration between
health and social care.
— More detail is needed on what the Coalition
Government propose to do with low volume services. We would like
to see this omission addressed by the health select committee's
inquiry.
ACCOUNTABILITY FOR
COMMISSIONING DECISIONS
Patient representation
1. There is a lack of detail in the white
paper about patient involvement. It is easy to say that patients
will be involved, but the proposals give no detail about how this
will happen.
2. We are concerned that the views of carers
are not being considered as part of the Coalition Government's
proposals. Carers contribute substantially to the delivery of
health and social care. Carers are estimated to save the Government
between £67 and £87 billion a year yet receive scarce
consideration in the white paper. This needs to be addressed and
we would like to see the committee's inquiry give consideration
into the needs and views of carers.
3. We are a partner in Neurological Commissioning
Support. In their evidence to the last select committee's inquiry
into commissioning they explained how patient representation within
PCTs can sometimes be tokenistic. We think that this tokenism
is likely to continue unless measures and guidelines are in place
to address it.
4. The white paper does not give any indication
that the views of patients and carers must be included, rather
that GP consortia will probably include them. Patient and carer
representatives need to have a place on the board of GP consortia.
We know of examples where the view of the voluntary sector is
already being sidelined. In one area we have been working with
a multi-sector neurology network. This network has been lead by
the voluntary sector with strong patient and carer involvement.
We have tried to engage with the four GP consortia that will be
taking over. We have been unable to persuade them to come to any
of the network meetings and have been so far unsuccessful in being
able to attend consortia meetings to explain the work of the network.
In conversation with the minister he has told us that we do not
have to wait for permission from the Department of Health to being
conversations with GP consortia. We would like to express that
these conversations are not always easy to arrange.
5. However, patient and carer representation
needs to go beyond committee involvement. This needs to include
a variety of involvement techniques such as focus groups, internet
social networks, telephone interviews, house visits and visits
to community places such as libraries. It is not enough to have
a survey and a place on a committee.
6. We are also concerned that the proposed
arrangements will make it extremely difficult for the voluntary
sector to engage with commissioners. We currently someone working
part time in each region (aligned to the strategic health authorities)
working with people with people with Parkinson's and their carers
on developing services. It is difficult enough for them to develop
relationships with each PCT in their area. When this fragments
further down to GP consortia some areas will lose out. This is
at a time when the voluntary sector is facing increasing funding
difficulties. We are concerned that this will mean GP consortia
who are not interested in taking account of the views of patients
and carers will be able to sideline them unchallenged.
The role of the NHS Commissioning Board
7. The white paper makes no mention of workforce
planning. As this is something which currently falls within the
remit of strategic health authorities, it needs to be addressed.
We think that that NHS Commissioning Board could fulfil this function
as GP consortia will be too small to address it.
8. In order to do this and if it is to fulfil
its other functions adequately, it needs to have a regional structure
in place. The proposals to have a national commissioning level
and a local commissioning level leave too big a gap. There are
a lot of specialised services commissioned at a regional level
and this has not been addressed in the white paper.
9. The NHS Commissioning Board needs to
produce requirements on commissioning neurological services. About
10 million people live with a long term neurological condition
in the UK and they account for about 20% of acute hospital admissions.
The previous administration produced the National Service Framework
for long term neurological conditions. It contained sound, evidence
based commissioning guidelines but unfortunately lacked the support
needed to implement it. In this new world of commissioning, GP
consortia need enforceable outcomes that support excellent neurological
commissioning. Parkinson's UK have skills and expertise to help
in this.
10. If the new structure is to succeed in
having integration across health and social care, the commissioning
board needs to reflect this in its composition. We would like
to see strong representation from local authorities, the voluntary
sector, patients and carers. These groups need to have a place
on the board.
HealthWatch
11. We are concerned that the current proposals
lack the independence necessary for effective monitoring and scrutiny.
At a local level having Health Watch sitting within local authorities
mean they are reliant on funding from the body they are supposed
to be scrutinising. This is the same situation at a national level
where they sit within the Care Quality Commission. We think this
needs addressing for commissioning to work well.
Integration of health and social care
12. We think the new structures could make
integration between health and social care more difficult. If
GP consortia are free to form across local authority boundaries
we do not see how this will promote integrated working.
13. We have raised this concern with the
minister who said that if GP consortia wanted to work across different
local authority boundaries they should be free to do so. Our difficulty
lies with how local authorities will engage with GP consortia,
rather than how GP consortia will engage with local authorities.
Social care is often the poor relation of health care. If local
authorities, facing 25% budget cuts and a huge reorganisation
of health services, have several GP consortia to try and negotiate
with, people will fall through the gaps.
14. It will also make the scrutiny functions
of HealthWatch and health and wellbeing boards extremely difficult.
Instead of monitoring one GP consortia, they could be trying to
scrutinise several. Some will likely to be easier to engage with
and providing better services and some could be performing badly.
The inequity of service provision is likely to be far worse, even
within the same local authority.
How will vulnerable groups of patients be provided
for under this system?
15. We are concerned that vulnerable groups
of patients will be worse off under the new system. PCTs have
a duty to commission for everyone, whether they're on GPs registers
or not. This lacks this. Vulnerable groups are less likely to
engage with services and more likely to need them.
16. The previous select committee inquiry
found that PCTs weren't using the available data effectively.
We don't think that GP consortia are likely to improve this. Instead,
that monitoring role across patient groups will be lost. There
will be no central monitoring of demographic data and vulnerable
groups could fall out of the system entirely. Similarly, people
in residential homes, who are currently hidden within the social
care system, will stay hidden.
Transitional arrangements
17. We know that the transition between
the two systems is already causing difficulties. As mentioned
previously, we are trying to start conversations with GP consortia
and we are not always being listened to.
18. With many PCTs we have spent time developing
relationships and putting our case forward for service development
that will save money. One of the main areas we do this is with
Parkinson's nurses. In the example we quoted before, the PCTs
had accepted our evidence and agreed that Parkinson's nurses do
save money and make a huge difference to the quality of life for
people with Parkinson's. We are now having to start from the beginning
and this is causing delays to nurses being put in post. These
changes are impacting on the purse strings of the NHS and causing
further distress to people with Parkinson's.
19. In evidence to the previous health select
committee, the Neurological Commissioning Support explained how
frequent staff changes within commissioning meant it was difficult
to build relationships and that expertise was lost. These changes
are exacerbating existing hurdles to good quality commissioning.
20. We are also concerned that the foundations
for neurological commissioning are too weak to see health and
social care services through the transitional period. The Coalition
Government have abandoned the National Service Framework for long
term neurological conditions without putting in place anything
to replace it. Even with the National Service Framework in place,
neurological services were often not meeting the quality requirements.
Without it, we worry that the services that are in place will
not continue to be commissioned by GP consortia. In two or three
years time, neurological services could have fallen away with
little impetus to replace them.
Low volume services
21. The white paper fails to address low
volume services in any detail at all. Some thought is given to
specialist services and some thought is given to services used
by many people at primary care level. However, "low volume"
services are being treated as an afterthought. As a charity that
represents people likely to fall within this category we are worried
at how this will be resolved. It is difficult to comment as no
detail is given in the white paper on proposed arrangements. We
would like to see the inquiry address this issue.
22. We need to make sure that health and
social care services are commissioned at the best level. Consideration
has been given to what level specialist services should be commissioned
at but not low volume services.
October 2010
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