Written evidence from the British Heart
Foundation (COM 73)
1. The British Heart Foundation (BHF) is
the UK's leading heart charity. We are fighting against heart
and circulatory disease—which is the UK's biggest killer
and claims around 200,000 lives each year.[125]
Our vision is of a world where no-one dies prematurely of heart
disease.
SUMMARY
— Partnership working between public sector
commissioners and the voluntary sector is vital. Charities can:
— provide a wealth of intelligence on patients'
needs and wishes;
— facilitate the engagement of patients,
carers and health professionals in commissioning;
— provide valuable support and advice to
commissioners on service design;
— and help disseminate evidence on best
practice and innovation.
— Commissioning policy should recognise
the role of charities as co-commissioners and co-investors in
the health and wellbeing of local communities, and should involve
charities throughout commissioning processes.
— Clinical networks also engage patients,
carers and health professionals in commissioning, promote coordinated,
innovative, and cost effective care, and can provide a valuable
bridge during the period of transition. Their vital work must
continue and develop.
— Patients and carers should be involved
in shaping services along the whole patient pathway; the NHS Commissioning
Board should have representation from and genuine engagement with
patients, carers, and voluntary sector organisations.
— Research and education and training should
be given appropriate status in the new system, and there should
be research representation on the NHS Commissioning Board.
— The crucial role of the NHS in promoting
healthy lifestyles and preventing ill-health must be reflected
in the NHS Outcomes Framework and commissioning frameworks.
— Investments in the health and wellbeing
of local communities by charitable organisations that are currently
administered by PCTs should not be put at risk during the period
of transition to alternative organisational structures.
— Patients and carers should be fully engaged
in specialised commissioning to ensure integrated health and social
care services for small and scattered patient groups.
Q. How will commissioners access the information
and clinical expertise required to make high quality decisions
about the shape of clinical services?
2. Clinical networks play a valuable role
in engaging patients and carers in commissioning, as well as providing
expert clinical advice and support for commissioners. This support
will be particularly important as GP consortia and the NHS Commissioning
Board take on their new roles. We would urge the Government to
ensure that the increasing competition between providers and the
financial challenges facing the NHS, do not threaten the vital
work of cardiac and stroke networks.
3. Multi-professional engagement in commissioning
will be crucial to delivering high-quality, patient-centred, cost-effective
care. Charities that support and engage with health professionals
can help to facilitate this. The BHF fully funds 112 specialist
cardiac health professional posts, and part funds 361 posts,[126]
and supports these professionals to become expert practitioners.
We believe that specialist cardiac nurses and Community Resuscitation
Development Officers (CRDOs) could make a particularly valuable
contribution to commissioning.
BHF SPECIALIST NURSES
4. BHF specialist heart nurses cover a range
of specialties such as heart failure, acute coronary syndrome,
paediatrics, arrhythmia, adults with congenital disease, genetics
and palliative care. BHF specialist heart failure nurses, for
example, monitor symptoms, titrate medication, and support patients
to understand and manage their condition and to stay in their
homes. An evaluation found that heart failure nurses reduce all
cause admissions by an average of 35%, saving approximately £1,826
per patient.[127]
Specialist heart nurses would be well placed to advise GP consortia
on the commissioning of high-quality, patient-centred, cost-effective,
multi-disciplinary services, and to achieve the best outcomes
across acute, chronic, and palliative care.
COMMUNITY RESUSCITATION
DEVELOPMENT OFFICERS
5. The BHF has established new Community
Resuscitation Development Officer (CRDOs) (or "responder
manager") posts within emergency services to improve survival
from out of hospital cardiac arrest. Most cases of sudden cardiac
death are potentially reversible by giving the heart a type of
electric shock (defibrillation), but treatment is needed within
four or five minutes of the event. Ambulances rarely reach a victim
in this time but the window of opportunity can be doubled if bystanders
give "basic life support" in the form of chest compressions
and rescue breathing.
6. CRDOs assess a local community's capacity
for resuscitation, ensure the placement of defibrillators in public
places, provide training and support for volunteer community first
responders (trained to use defibrillators), and deliver emergency
life support training for the public. Evaluation has shown that
CRDOs are dynamic and enthusiastic developers of community capacity
for resuscitation,[128]
recruiting volunteers and boosting initiatives such as emergency
life support training. They also have an important role in developing
information systems, sharing best practice, conducting research,
promoting innovations, and encouraging partnership working. The
involvement of CRDOs in commissioning community resuscitation
services would enable their valuable knowledge and expertise to
be shared, and would ensure services are properly specified and
costed, explicitly contracted for, and integrated into NHS services.
Q. How will commissioners address issues
of clinical practice variation?
7. Access to robust and comparable data
is crucial to identifying and addressing variations in care. Data
will need to be available on a local basis so population outcomes
can be compared between different areas, and so the NHS Commissioning
Board can hold GP consortia to account. We have concerns about
the impact the new right to free choice of GP will have on the
comparability of geographical population data.
8. The use of benchmarking techniques, such
as the Advancing Quality programme begun in the North West Strategic
Health Authority region and now extending to other regions, can
also help to identify variations in practice.
9. Clinical networks can also play a crucial
role in enabling patients, clinicians, managers, and commissioners
from different organisations to work together to standardise the
quality of services through joint quality assurance, audit and
benchmarking. The Government should also ensure that support is
made available so the valuable work of national independent, clinically-led
audits can continue.
Q. What arrangements will be made to encourage
the Third Sector (both) as commissioners (and as providers)?
10. Charities can play a valuable role in
providing advice and support to commissioners on service design
and innovative models, and in disseminating evidence and best
practice to professionals. The BHF recently joined with nine other
leading health charities to present consensus solutions to delivering
coordinated, high-quality, patient-centred, cost-effective care
that supports self-management, delivers effective prevention,
early diagnosis and intervention, and provides emotional, psychological
and practical support.[129]
The NHS Commissioning Board should have representatives from,
and genuine engagement with voluntary organisations.
11. The BHF has also recently worked closely
with the Department of Health (DH) and NHS Improvement on a cardiac
rehabilitation commissioning pack for commissioners and a patient
friendly document to sit alongside it. This is an excellent example
of a charity working to improve the commissioning pathway in a
vital area that has previously been overlooked.
12. In addition, leading charities like
the BHF play a key role as co-commissioners and co-investors in
the health and wellbeing of local communities. Although the BHF
does not supply services under contract to the NHS or local authorities,
we are a significant contributor to the health and well-being
of local populations. For example, we have invested £9 million
in selected communities across the UK through our Hearty Lives
programme which aims to reduce the high levels of cardiovascular
disease in targeted communities.
13. Hearty Lives is a valuable example of
joint commissioning between a charity and the NHS. However, at
present, commissioning policy often fails to take sufficient account
of this, focusing instead on charities as providers of services
under contract. The NHS Commissioning Board should ensure that
commissioners involve charities throughout commissioning processes.
14. The Hearty Lives programme has also
highlighted the need for commissioning policy to more clearly
distinguish between taxation and charitable expenditure as sources
of funding. Charitable work is funded to a large degree through
donations from people, businesses and philanthropic organisations,
and these funds should not be subject to undue bureaucracy which
negates the flexibility and speed of response for which the voluntary
sector is valued.
Q. How will patients make their voice heard
or their choice effective?
15. The BHF welcomes the aspiration in the
NHS White Paper to promote a local voice for patients, and to
create an NHS which is more responsive to patients' needs and
wishes. The work of the NHS Commissioning Board should be informed
by patients and carers' experiences. The Board must have representation
and genuine engagement with patients, carers, and voluntary sector
organisations. Charities like the BHF can share a wealth of information
on patients' needs and experiences, and can facilitate engagement
with patients and carers.[130]
16. The new local HealthWatch services should
be fully independent, whilst having adequate authority and sufficient
resources to carry out their functions. It will also be important
that there is absolute clarity about the remit and mandate of
HealthWatch, and that they are recognised by commissioners as
the legitimate voice of patients. Awareness raising will be needed
to champion their role among local people.
17. Local HealthWatch should build on learning
from LINks. In many places LINks are not yet properly established,
and we would like assurance that the new structures will be given
time to embed—continuity is essential to maintaining public
confidence in patient and public involvement processes.
18. Advocacy work can be demanding, time-consuming
and high profile. It is essential that this does not detract from
patient and public involvement in designing and developing services.
19. Many heart patients are already involved
in shaping services through cardiac and stroke networks. Local
HealthWatch should establish close links with clinical networks,
and ensure that relevant information about services is communicated
to National HealthWatch within the Care Quality Commission.
20. The move to a mixed economy of providers
and the extension of personal health budgets will make it even
more essential that patients receive support in making choices
about providers. Patients need advice about what to look out for
when choosing providers, clear information about the full range
of services available, support in understanding, interpreting
and translating this information, and practical advice about how
to access services. This support is particularly important for
vulnerable groups. Information must be accessible to all patients,
whatever their literacy skills and mental capacity, and should
be available not just online but also face-to-face and via the
telephone.
21. We believe that patients are likely
to seek advice about providers and treatments from their local
GP or other health professional, who they deem to have the appropriate
clinical knowledge and with whom they already have a relationship,
rather than from staff at local HealthWatch. The role of HealthWatch
should therefore be to drive and support progress locally with
clinicians, including GPs, and to link with any national initiatives.
Local HealthWatch may also have a role in providing practical
information, for example about transport to services.
Q. What will be the role of the NHS Commissioning
Board?
22. Clinical research is critical to improving
the quality of patient care, and the NHS Commissioning Board should
have a role in ensuring that research is given appropriate status
in the new system. There should be research representation on
the NHS Commissioning Board, and participation in research should
be reflected in the NHS Outcomes Framework and commissioning frameworks.
23. The role of the NHS Commissioning Board
in providing strategic oversight of national workforce planning
and of healthcare providers' funding plans for training and education,
will also be essential.
24. We have concerns about how the NHS Commissioning
Board will hold GP consortia to account for their performance,
and also provide the necessary support for consortia in taking
on their new roles. A great strength of clinical networks is their
ability to provide independent expert advice and support to commissioners.
We urge the Government to ensure that the financial challenges
facing the NHS do not threaten the vital work of cardiac and stroke
networks (for more information, see our response to the question
on access to information and clinical expertise).
Q. How will commissioning interface with
the Public Health Service?
25. It is essential that the creation of
the Public Health Service and the greater role for local authorities
in public health do not result in NHS commissioners and staff
no longer seeing public health as part of the role of the NHS.
The crucial role of the NHS in promoting healthy lifestyles and
preventing ill-health must be reflected in the NHS Outcomes Framework
and commissioning frameworks.
26. While we welcome the Government's proposal
to establish a Public Health Service, there is a risk that
this will perpetuate the disjunction between public health-led
needs assessment, and service planning and delivery. Effective
joint planning and integrated delivery should be a requirement
placed on both GP consortia and the new Public Health Service.
Joint Strategic Needs Assessments should produce useable results
at GP consortia level, and commissioning plans should demonstrably
flow from the needs assessment.
Q. Will the new arrangements safeguard current
examples of good practice?
27. Through the BHF Hearty Lives programme,
the BHF has invested £9 million over three years in selected
communities across the UK with the aim of reducing the high levels
of cardiovascular disease in targeted communities. This investment
has largely been through posts and projects currently administered
by PCTs. Investments in the health and wellbeing of local communities
by charitable organisations that are currently administered by
PCTs should not be put at risk during the period of transition
to alternative organisational structures.
Q. Who will drive innovation during the transitional
period?
28. During the transitional period, there
should be significant engagement with charities to help disseminate
and mainstream voluntary sector innovations in service delivery.
29. The BHF is the single biggest funder
of heart-related research in the UK, contributing more than the
Medical Research Council and the Wellcome Trust put together.
The BHF invests a total of £28 million in prevention and
care programmes each year consisting of public education, professional
training and support, and new service model research, pilot testing,
evaluation and audit.
30. The BHF recently joined with nine other
leading health charities to present consensus solutions and innovative
examples of delivering coordinated, high-quality, patient-centred,
cost-effective care.[131]
Q. What arrangements are proposed for the
commissioning of specialist services?
31. At present there is significant variation
between regions in terms of the commissioning of specialised services,
with the same service being commissioned at a local level in some
regions and at a regional level in other regions. The DH should
conduct a survey to establish a clear national picture of what
services are currently being commissioned at what level.
32. If GP consortia are to take on new responsibilities
for commissioning specialised services which are currently commissioned
regionally, the DH should ensure that during the transitional
period they are equipped with the necessary skills to do this.
The DH should take into account that where a specialised service
is currently being commissioned by a lead PCT for a region, the
burden of transferring skills to GP consortia will fall on this
PCT (as the others will not have the necessary experience and
knowledge).
33. Patient and carer involvement is crucial
to specialised commissioning. At present, specialised commissioning
is mainly clinician led, and there is insufficient involvement
of patients and carers. Involving patients and carers in specialist
commissioning is essential to ensure that health, social care
and other services for small and scattered patient groups are
still developed and delivered in a holistic way and around the
needs of patients. For example, patients could be involved in
developing contract service specifications. The NHS Commissioning
Board should also build on the work of the National Specialised
Commissioning Group to bring together disparate user involvement
groups at a national level.
CHILDREN AND
YOUNG PEOPLE
WITH CONGENITAL
AND INHERITED
HEART CONDITIONS
34. The BHF estimates that there are 32,000
young people between 12 and 19 currently living with a heart condition
in the UK.[132]
At a local level, Children's Trusts are currently working towards
holistic commissioning of health, education and social care within
a local area. However, children and young people with heart conditions
are scattered in small numbers across the country, and health
services are therefore currently commissioned at multiple levels,
including nationally and regionally. This can make it difficult
to ensure that health, social care, and education services are
properly integrated. The NHS Commissioning Board should work with
charities like the BHF to ensure that small and scattered patient
groups do not suffer from fragmented care because they do not
all live in one community.
PEOPLE WITH
INHERITED HEART
CONDITIONS
35. Inherited cardiac conditions are estimated
to result in between around 140-540 deaths in England every year
among those aged under 65.[133],
[134]In
2009, the House of Lords Science and Technology Committee report
on genomic medicine found significant inequalities in the provision
of genetic services in the NHS in England with regards to tests
for single-gene disorders and for single-gene subtypes of common
diseases due to the lack of a national policy on commissioning
of genetics services.
36. A DH-led initiative for inherited heart
disorders is now underway. One component of this is the joint
DH and BHF Genetic Information Service (GIS) which helps families
to get an expert assessment in a specialist clinic for inherited
heart conditions, and to deal with being diagnosed with an inherited
heart condition or losing a loved one. It is not clear whether
the commissioning of genetic testing will rest with the NHS Commissioning
Board, or whether it will be part of the new Public Health Service.
We are calling for a single national system for cascade screening
and would be very concerned about any arrangements which make
screening more fragmented and less effective.
37. The BHF is providing detailed responses
to the NHS White Paper consultations which will be available on
our website from 11 October.[135]
We would welcome the opportunity to support the Committee in its
enquiry and would be pleased to provide any more information.
If you have any questions please contact Beatrice Brooke, Policy
Manager. (brookeb@bhf.org.uk).
October 2010
125 www.heartstats.org Back
126
For more information see BHF Specialist Nurses-Changing face of
cardiac care. Back
127
BHF (2010), BHF Specialist Nurses-Changing the face of cardiac
care. Back
128
For more information please see: Matrix Research and Consultancy
(2006), British Heart Foundation and the Department of Health,
An evaluation of the Community Defibrillation Officer role. Back
129
Kings Fund (2010), How to deliver high-quality, patient-centred,
cost-effective care, Consensus solutions from the voluntary sector. Back
130
The BHF has a network of more than 300 affiliated Heart Support
Groups, set up by patients for patients. We also run Hearty Voices
programmes, free one-day training courses delivered across the
country that help heart patients develop the knowledge and skills
to confidently represent the voice of heart patients and carers
and to get involved in influencing the health service, both locally
and nationally. Back
131
Kings Fund (2010), How to deliver high-quality, patient-centred,
cost-effective care, Consensus solutions from the voluntary sector. Back
132
Stefanie Lillie, Diane Card. Meet@TeenHeart: Working with teenagers
with heart disease. British Journal of Cardiac Nursing, Vol 3,
Iss 5; 7 May 2008, pp 190-192. Back
133
Bowker TJ et al (2003) Sudden unexpected cardiac or unexplained
death in England: a national survey. Q J Med 96:269-279. Back
134
Behr ER et al (2007) Sudden arrhythmic death syndrome:
a national survey of sudden unexplained death. Heart 93:601-605. Back
135
www.bhf.org.uk Back
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