Patient & Public Involvement Forums
National Association of Patients Forums
Chair, National Association of Patients’ Forum
C/o CPPIH, South East Regional Office
3000 Cathedral Hill
Guildford, GU2 7YB.
Have Your Say. Consultation on the Regulations for LINks
Draft Local Involvement Networks Regulations 2008
1. The consultation document illustrates the central problems arising from the way LINks is framed in the legislation; that LINks will be expected to carry out a wide range of functions without providing them with the powers and structures to deliver functions effectively. A simple example: LINks are required "to make reports and recommendations", but it will be extremely difficult for this activity to be carried out effectively by the loose networks which the legislation is intended to create. Such activity is predicated on a strong and committed membership group, competent to analyse information and views with discernment based on experience and knowledge of the experiences of users and a detailed knowledge of the system. Basic principles of community organisation demonstrate that weak organisations of the type envisioned by the Government, produce weak ineffective bodies with little influence. Either the Government took poor advice or developing a weaker, ineffectual system is their intention despite the rhetoric.
2. On page 3, the emphasis is almost entirely on "people" participating in activities. In practice being effective and having influence is dependant on committed members who, having taken the public pulse, are able to dialogue with the decision-makers on a sustained basis.
3. On page 6 there is considerable emphasis on gathering information from surveys, focus groups, research and so on. This is highly desirable to inform independent LINks, but these activities are labour intensive, require research expertise if the result are to be credible and will be costly to carry out. The level of funding available must be adequate for these activities otherwise LINks will fail.
Status and credibility of LINks
4. Health and social services organisations are major public institutions, which are unlikely to take LINks seriously unless the Government gives LINks real status. LINks must be and be seen as an independent, statutory bodies. The proposal that LINks, despite having specific rights of access to information through the legislation, uses the powers under the FOI like any other individual citizen is absurd and we believe is intended to undermine their special status. The Government are giving health and social care providers the message that LINks will be weak and powerless bodies – presumably to reassure them that they have nothing to fear from public monitoring of the NHS and Social Care Services.
Access to information – the need for stronger powers
5. LINks should not be denied information because it is accessible by other means, or on the grounds that the authority intends to publish the requested information "at some future date", or that release of information would prejudice the commercial interests of a body contracted to provide services to the public. Nor should LINks be denied information on the grounds of cost – there must not be any charge for information to a LINk. The FOI Act is frequently misused by public authorities to deny information to the public, e.g. by forcing them to make multiple requests, which are then refused on the grounds of cost. It would be disastrous if LINks were to have their work undermined by the mendacious misuse of the Act by public bodies and have their work and their finances tied up in battles over information requests.
The consultation document, by default, suggests the need to increase the power of a LINk to access information above that currently provided by the Freedom of Information Act. We therefore reject the statement at Page 7. Para1 that;
“We therefore do not consider it necessary to make the regulations under clause 228(1) (a) at this time….
Page 10. Para 3.
“The Government believes that the current FOI Act will give LINks the ability to ask for and get most kinds of information from services- providers”…..
We believe LINks should be given greater powers than those currently available under the FOI Act.
We believe that the Government’s proposal not to make regulations under clause 228 (1) at this time, is simply a device to fetter the powers of LINks and to create bodies, which will be seen as being ineffective by the public.
By conferring greater powers on a LINk the Government would ensure:
That appropriate requests for information are made.
That timely and appropriate responses are received by LINks.
That services-providers are assisted through the central co-ordination of such requests for information.
The system of accessing information worked well for CHCs and Patients’ Forums; it would be unwise and counterproductive to change it.
Duties of Services-Providers to Respond to LINks
6. The regulations seem to use “services-provider” to mean both “provider” and “commissioner” as the latter words are commonly used in the NHS. This is confusing and renders the regulation unusable in practice.
Example – Regulation 2 (4)
“A relevant services-provider is a services-provider who was responsible for commissioning…….”
It is probable therefore that most reports will be directed to commissioners rather than providers (using NHS definitions).
Weakness of the proposed regulations
7. On page 11 LINKS are charged with ‘forming a view on how services can be improved and strengthened’. It is our view that the destruction of the current system of PPI and the loss of expertise of members will result in a long period before the new LINks will be able to carry out this duty effectively. It is also our view that the loose networks proposed for LINks will delay their ability to be effective as champions for the improvement and strengthening of services, because loose networks are effective as social networks and in the building of social capital, but always fail to have influence on decision-making.
Need for responses from all levels of health, social care and specialist services
8. The specific duties to respond to reports must embrace all health and social service bodies from the local, through the regional, to the national. The regulations need to make it clear that services are provided on a local, regional and national basis and that policy is also made at a local, regional and national levels. For LINks to operate effectively, health and social care bodies at each level must have a duty to respond to local LINks and also to the regional and national clusters of LINks when these are formed.
9. The Government have argued that the main reason for the establishment of LINks is to create bodies that have an overarching remit within health and social care. This concept of a body that can monitor health and social care services from cradle to grave is undermined by the exclusion of some children’s and privately commissioned services (apart from listed under Regulation 6).
It is essential for a LINk to be aware of service provision issues in its area. This remains true if some children’s services were to be excluded because if a LINk becomes aware of an issue with respect to children’s care, it may be an indication of a larger problem with that service provider. We recommend that if the Government persists with their intention to exclude some services from the purview of LINks, a duty should be placed on all relevant bodies, e.g. OFSTED to copy LINks into relevant reports on services.
Responses to LINks in some cases will be voluntary
10. It is unacceptable that in certain cases replies to LINks reports will be voluntary. Regulation 3 does this in certain cases, by excluding certain services from the purview of the LINk, for example:
3(a) children’s services, defined as “social services functions of a local authority so far as relating to persons aged under 18”.
The reason given for this is that there are already effective mechanisms in place to ensure that the views of children and young people are taken into account.” (p 12). How this is done in the case of newly-born babies with severe learning difficulties and other clinical/social problems is not explained. The real reason for the exclusion is not explained and it renders the Regulations absurd should a LINks becomes aware of harm or abuse or poor service quality and has no powers to act and cannot require a response to matters raised.
At the other end of the 0-18 age scale, some individuals are in ‘sheltered accommodation’. If a LINk reports to the provider that this is in poor repair, why is the provider told that its reply is voluntary? It is not voluntary if the tenant is 18 or over, yet it is now often policy not to evict such tenants on their 18th birthday.
Any competent person representing the NHS or Local Authority Social Services in these matters is likely to advise their employer that it would be unwise to keep silent and not reply to a damaging report by a LINk. So there is no rational behind this exclusion policy. Does the DH intend to justify their position?
The exemption of children's services is also wrong in principle. All public services are covered by bodies such as the Healthcare Commission. Public and patient involvement should be applied equally to all services in order to ensure that the public view on service quality is presented to authorities and institutional abuse exposed.
3(b) Excluded Services, i.e. other than “children’s services” which are also excluded (see above).
The main effect of 3(b) appears to be the exclusion of joint working by LINks, though its exact effect is obscure. It is very common in London and around London for a service to be provided to persons in more than one PCT/Local Authority area. To report on this properly, several LINks might agree which one should report. Then under this regulation seemingly – the provider or commissioners (NHS definitions) would not have to reply to the report if it quoted from another LINk’s report on the subject.
This needs some such amendment as “unless the report is made under joint arrangements by two or more LINks or is relevant to the area of service of the recipient of the report”. Note –the LG and PIH Bill was amended to allow LINKs to work jointly. This draft regulation may need to be amended in light of that amendment.
Failure to respond by a health or social care service
11. As a consequence of the way that the Regulations are written, LINks will have no powers to require a provider or commissioner to take action in response to a report or recommendation. Although, the provider has to reply within 20 working days they can easily deflect any recommendations or criticism they receive. We recommend that a third party acts as an arbiter to resolve situations where a PCT or service provider fails to respond appropriately to reports and recommendations from a LINk. Bodies who could take on this role include the Healthcare Commission, Strategic Health Authority or the OSC.
Duties of services – providers to allow entry
Excluded Activities – the skills of lay people who monitor care
12. There are far too many potential restrictions to the powers of a LINk to access a services-provider’s premises. Too much power is placed in the hands of a services-provider and draft Regulations do not provide for a LINk to have the power to challenge to any spurious decision.
We believe there should be very few exceptions. For example whilst we agree that the ‘protection of privacy and dignity are essential’, the training and experience of Forum members means that their judgement in these matters is often better formed than that of the service providers, who sometimes allow standards to fall because of their own institutionalisation; hence the need for lay people to monitor standards of care.
Protecting the effective provision of services to patients and users
13. To exempt entry to LINKs on the grounds that it might "compromise the effective
provision of a service" is unreasonable and subjective. If a service provider makes such an assertion it could well be to protect them from adverse criticism and would enable such a provider to ‘drive a horse and cart through the principle of monitoring by LINks’. Preventing entry to a person’s space should be a matter for the individual concerned and in some cases their advocates and carers – it should not be on the decision of the provider.
The right of appeal against any refusal to allow entry
14. We recommend that whenever an exemption is applied, there must be a right of appeal for LINks to an independent body. This is essential if the powers of the public through LINks are to remain unfettered.
Children’s social services 2(1)(a)
15. This repeats the reasons given for a similar exclusion of a duty to reply to a report. Again, how are the views of babies with learning difficulties being obtained? The claim that the existence of a Children’s Rights Director deals with this point appears to be a weak argument. The existence of the Healthcare Commission does not preclude entry to health care premises. Why is this Direction more exclusive? Patients’ Forum members are all CRB checked and all LINKs members will be, if authorised to enter. We are not aware of any problems in relation to the visiting of premises for the purpose of inspection of services by CRB checked Patients’ Forum members. The regulations therefore appear excessive and exclude LINks members unreasonably.
Excluded premises 2.-(1)(a) the parts of a care home which are not communal areas.
16. It is unreasonable to exclude kitchens, shared toilets or washrooms and offices from inspection by LINks. It would be better to rephrase this as “premises which are occupied by one or two persons as their residence” or some such phrase. Kitchens, toilets and shared facilities should obviously be open to inspection as should communal facilities. Offices should be easy of access by residents.
Acting reasonably or proportionately. (Regulation 3. (2)(g))
16. It is the intention of the Government that access can be refused if in the opinion of the services-provider the LINk/member is not acting “reasonably” and “proportionately”. We believe that the inclusion of such subjective judgements in the Regulations is unreasonable. It is the institutions which are being monitored that might be responsible for negligence that leads to death and harm to patients. That is why bodies such as the HCC and NPSA were established and why lay monitoring is essential. Lay monitors are not usually institutionalised, do not harm patients and are a very important resource. Providing an institution, which might be responsible for harm to patients (consider for example the situation at Northwick Park Hospital) with the tools to label lay people who are members of LINks as behaving in a way that is ‘unreasonable and disproportionate’, serves only to protect unsafe institutions from criticism and muzzles the whistleblower.
We believe that LINks members, suitably trained and CRB checked, should have an automatic statutory right to enter, view, observe and monitor (as the PPI Forums do at present). We recommend that in the event of an issue arising in relation to the actions of an NHS or social care body or LINk or its members, or where access is refused unreasonably that third party adjudication should take place through the HCC, SHA or the OSC.
Services-providers in the private sector (Regulation 6)
17. The inclusion of five categories (GPs, dentists, pharmacists, opticians and the owners of such premises) of prescribed primarily private contractors in Regulation 6 is welcome. Throughout the Lords debates on the Bill, Ministers replying stated Government policy for the private sector was NOT to legislate but to include appropriate clauses in their contracts. We strongly dispute the rationale used by the Government to justify this approach. Their approach will establish a parallel systems of monitoring, which will be confusing, obscure and will in practice achieve the objective of excluding services provided by private providers or commissioners, through a contract with a PCT or NHS Trust or NHS Foundation Trust, from being monitored in the same way as other NHS services. In addition care home providers (80% private) are left out of this list. We strongly recommend an amendment to this Regulation so that all private providers are included with paragraph 6 of Regulations as prescribed services providers.
Monitoring of Regional National and Specialist Services
18. The Regulations do not currently deal with the need for LINKs to monitor regional, national services and specialist services that cross more than one LINk boundary. Neither do the regulations deal with the responses to LINKs by such providers and commissioners. We recommended that a duty be placed on the providers and commissioners of such services to respond to regional and national clusters of LINKs where they decide to monitor such services jointly.
Referrals to OSC
19. The strengthened relationship between LINKS and OSCs will improve the ability of the public to refer matters to OSCs. However, in practice these bodies are often far too under- resourced to deal with matters with the urgency that is required by the public or patients. Therefore we strongly recommend that LINks should have a power to formally refer matters of considerable concern to local people directly to the Secretary of State, where a LINk at its meeting in public, considers such a course is necessary to protect users of health and/or social care services.
C/o CPPIH, South East Regional Office, 3000 Cathedral Hill, Guildford, Surrey, GU2 7YB Tel: 0845 120 7111 Fax: 0121 222 4511 Email: NASG@cppih.org
Malcolm Alexander Chair of the National Association of Patients’ Forums at firstname.lastname@example.org
Friday, 14 December 2007
LINks Regulations - a joint response
I thought it useful to copy this here in full: