National Assembly for Wales

Health and Social Care Committee

The work of the Healthcare Inspectorate Wales

Evidence from the Patients Association – HIW 23

Patients Association Submission to the Wales Health and Social Care Committee investigation into the Health inspectorate Wales.

                                                                                                                                    20^th September 2013

About the Patients Association

The Patients Association is a national health and social care charity which for over 50 years has advocated for better access to accurate and independent information for patients and the public; equal access to high quality health care for patients; and the right for patients to be involved in all aspects of decision making regarding their health care.

Our Helpline handles thousands of calls each year from Patients in England and Wales, and dispenses advice on any non-legal or non-clinical issues relating to health or social care.

The basis of this submission

The information in this submission is based on the information we have heard via our Helpline, our experiences of the Health Inspectorate Wales and our more comprehensive contact with the regulatory system in England.

As part of this submission we have also examined the work of the HIW and have examined in detail its website. We have sought to structure the submission by responding in turn to the terms of reference contained in the inquiry:

The effectiveness of HIW in undertaking it main functions and statutory responsibilities

It is extremely difficult to assess the effectiveness of the HIW and we do not attempt to make any judgement in this submission on its historical performance in detecting and tackling poor care amongst healthcare providers in Wales.

From the calls that the Patients Association receives to its Helpline from patients in Wales it is clear that patients do have concerns about the care being delivered there.  Whilst we have considerably less callers from Wales than we do England there are clear trends to the calls that we do receive, notably

• Concerns about waiting times
• Difficulties in accessing services
• A desire by patients to have more information about their healthcare
• A concern that sufficient mechanisms are not in place to tackle poor care where it occurs.

We would suggest that at present the HIW is not providing patients with useful information about the regulatory actions that have been taken against healthcare providers in their local area. At present the HIW website simply provides a list of the most recent regulatory decisions that have been taken.

We would strongly urge the HIW to redesign its website to make it possible for patients to easily discover the regulatory history of all healthcare providers.

The low numbers of patients that have contacted our Helpline that had previously sought contact with the HIW have suggested that they found it unresponsive to their concerns, with one typical comment being “They told me a lot about what they would do, but I don’t know what they did”.

We would suggest that HIW needs to be more transparent and open about the enforcement actions that have been taken and the powers that it has, in order to improve its standing amongst patients.

The investigative and inspection functions of the HIW, specifically its responsibility for making sure patients have access to safe and effective services, and its responses to incidences of serious concern and systematic failures

The Patients Association is not best placed to comment on the day to day performance of HIW. However it would be our observation that patients in Wales in general would not be able to comment on its performance, because it is difficult to determine any real link between what patients may tell the HIW and any regulatory action.

The overall development and accountability of HIW, including whether the organisation is fit for purpose

We believe that a key deficiency of the HIW at present is its lack of accountability to the general public, because it does not at present provide the public with sufficient information for it to make judgments about the effectiveness of HIW.

In seeking to respond to this question we have tried to investigate the regulatory actions taken by HIW in recent years but this has proven to be impossible as the information simply does not appear to be available in a form which enables conclusions on effectiveness to be reached.

The effectiveness of working relationship, focusing on collaboration and information sharing between HIW, key stakeholders and other review bodies

The Patients Association has a strong working relationship with the Care Quality Commission and makes the CQC aware of all cases heard by its Helpline which fall within the organisations remit. A number of regulatory actions have been prompted by this information and patients have been made safer as a result.

We do not have a similar relationship with the HIW although we have met with representatives of the HIW in the past.

In conjunction with our other comments in this submission we would urge HIW to seek to implement a strategy of greater engagement with patient groups as a matter of urgency, to develop relationships built on mutual information sharing in the best interests of patients and the public.

Consideration of the role of HIW in strengthening the voice of patients and the public in the way health services are reviewed

The Patients Association believes that regulators have a vital role in both protecting patients and providing an effective conduit for patient concerns.

However if it is to achieve this it is our opinion that HIW needs to improve its ability to understand what those concerns are. The lines of feedback between the public and the organisation are not immediately clear, and there is no easy way for patients to feed concerns into HIW.

Regulation only works effectively when it is driven by service users.  The CARE quality commission website contains a clear route for patients to raise a concern about their care provider.  There does not appear to be a clear link on the HIW website, and most of its content appears to be directed at service providers rather than users. The Patients Association and the Care Quality Commission produced a leaflet which is distributed in hospitals, care homes, GP surgeries and to members of the public through our Ambassador programme encouraging patients to ‘tell us about their care’ positive and negative experiences.

It is our observation that there needs to be a fundamental focus shift at the HIW, with establishing the concerns of patients becoming its primary focus.