DEAF ACCESS RESEARCH GROUP. Report No 1 DEAF DISCRIMINATION IN WALES: ACCESSING HEALTH SERVICES

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1 DEAF ACCESS RESEARCH GROUP Report No 1 DEAF DISCRIMINATION IN WALES: ACCESSING HEALTH SERVICES Author: IAN CRIMOND DEAF ACCESS RESEARCHER. ABSTRACT: The key purpose of this report is to examine to what extent goods and services providers in Wales are complying with the relevant sections of the Equality Act, specifically, those referring to the need to make reasonable adjustments in order to access a particular service. The focus of attention in this report is primarily concerned with health providers, GP surgeries, out of hours GP Services and the experiences of all deaf people dealing with these services. This report is aimed at the deaf and hard of hearing community. As such, it has been written in plain simple English, avoiding the usual niceties of academic report jargon. Report Content: Section 1 Section 2 Section 3 Section 4 Section 5 Section 6 Section 7 Introduction to the Equality Act Research Methodology used in this report GP Surgeries Wales OUT of Hours GP Service and Hospitals Personal Experiences of Deaf People Conclusions References

2 Introduction: The Equality Act (1), which incorporated most of the features of the 1995 Disability Discrimination Act (2), was seen by many as a landmark in providing disabled people in the UK with a benchmark against discrimination and harassment in our society. A key section of the Equality Act dealing with goods and services providers states (3) that: Any provider of goods and services, must provide alternative methods of accessing that service, when by virtue of an individual s disability, that individual is unable to use the existing method(s) of access To put this in simple understandable terminology,the above paragraph means that if you are a deaf person(4), who is unable to use a telephone, then the service provider must provide you with a reasonable alternative method of accessing their service; for example, by providing you with an , fax,or text messaging facility. It is totally unreasonable to expect deaf people to contact the service provider in person, because in the case of deaf patients, that individual may be too ill to travel to the surgery, may not have transport and may live in a rural area which does not enjoy frequent public transport services(5) It is unfortunate that the Equality Act leaves the question of what constitutes a reasonable alternative method of accessing any service to the legal system. (6) Given the economic situation in the UK today, it is understandable that funding for legal aid has been severely impacted and that legal aid for disability discrimination cases has been seriously restricted. The Equality and Human Rights Commission (7) has recently withdrawn funding for its Arbitration and Reconciliation free service, resulting in the closure of that service. This means that unless one has adequate financial means, the possibility of seeking redress for disability discrimination in the UK through the legal system, is exceptionally difficult, and for most deaf people who are in the lower socio-economic group (8), legal redress may well prove impossible. Whilst there have been several excellent reports into the problems deaf people face when trying to access primary health care (9), these reports for various reasons have been restrictive in nature and scope. Two reports stand out. Those by Barnet access and Sign Health ( 10) The Deaf Access Group, bearing in mind the lack of resources which we currently have, has attempted in this report to review deaf access to all GP surgeries in Wales. We attempted to investigate access facilities in Scotland, but after finding that no GP surgeries in Glasgow and Greater Glasgow health board areas provided alternatives methods of accessing the GP appointments system, we contacted, by Freedom of Information Requests, the Greater Glasgow health board, who informed us that they did not keep any records of GP access facilities. The decision was then made to conduct a more in- depth study of deaf access in Scotland at a later date. We have also examined 95% of all GP

3 surgeries in England, but because of the vast volume of additional information required for this report, we decided to leave the England analysis to a future date. One of the key difficulties in writing a report of this nature, surrounds the definition of what one means when using the term deaf. For the purpose of this report, we have included in the usage of the term deaf, all people who have absolutely no hearing as well as those people who are severely hearing impaired or profoundly hard of hearing. Our discussions with various audiology departments have failed to establish a universally accepted definition of the term deaf. Finally, in a report by the Equality and Human Rights Commission, entitled How Fair is Britain, the chairman states that we as a nation have become increasingly at ease with diversity of all kinds and intolerant of discrimination of any kind (11) This report strongly disagrees with the intolerant of discrimination of any kind remark. On the contrary, this report seeks to demonstrate that deaf discrimination is endemic throughout the health system in the UK. It is the essential argument of this report that we, as a country, have become complacent and institutionally non empathic towards the needs of deaf people. The report will put forward our recommendations for ending this situation, thereby enabling all deaf people in Britain to regain the respect and dignity to which we believe they are entitled. Section 2 : Research Methodology. From the Wales NHS web site, we obtained the names of every GP surgery and Out-of- Hours GP service provider. Every GP Surgery web site, where available, was viewed in relation to making a GP appointment. In addition to the telephone number for appointments, we also looked for evidence on the web sites of alternative methods of making a simple GP appointment for each surgery. We also noted the number of surgeries using a premium rate telephone number and checked the number with BT. (12) A fairly large number of surgeries, especially in Wales, had branch surgeries, and in many cases the branch surgery did not have its own web page, so we ignored branch surgeries from our report. At November 2012, Wales had 689 GP Surgeries: Clearly these figures are fluid in an ever changing economy, and whilst every reasonable attempt was made to verify the veracity of the information provided by GP surgery web sites, no responsibility can, in this report, be accepted for the accuracy of the information provided to us. It was clear that a number of GP surgery web sites had not been updated for some time and we accept that the data reported here may not represent an accurate and up to -date picture of GP surgery appointment systems.

4 In addition to the data collected from GP surgery web sites, we contacted via Freedom of Information Requests a substantial number of Welsh Health Boards to establish the veracity of our data. Unfortunately, Health boards do not keep records of GP appointment access methods, so they were unable to inform us of how many GP surgeries under their jurisdiction were compliant with section (20 ) of the Equality Act. In a later section of this report we will comment on the failure of Health Boards to maintain this information. Section 3 GP Surgeries: Wales has 7 Health Boards responsible for GP services in their areas. These are as follows: ABERTAWE BEVAN BETSI CAD CARDIFF CYM TAF HYWEL POWYS BRIDGEND TO SWANSEA ABERGAVENNY to YSTRADMYNACH ANGLESEY to WREXHAM BARRY to WHITCHURCH ABERDARE to TREORCHY ABERAERON to WHITLAND BRECON to YSTRADGYNLAIS The results of the study are as follows: Health Board No. of Surgeries Telephone Access/ visit the surgery On-line booking facility % Non- Compliant ABERTAWE BEVAN BETSI CARDIFF CYM TAF HYWEL ** POWYS ** A very high percentage [70%+] of the HYWEL Health Board Surgeries had no web page And hence the results for this BOARD are fairly meaningless.

5 Overall, 90 % of all GP surgeries in Wales are failing to provide deaf and hearing impaired people with reasonable alternative methods of accessing their appointments system. Using Freedom of Information Requests, we contacted a number of Health Boards and asked them why so many GP Surgeries were failing to comply with The Equality Act (Providing reasonable alternative methods of accessing the appointment system). The Health Boards stated that basically, they did not keep any records of GP appointments systems, and secondly that all GP surgeries were treated as independent contractors, over whom the Health Board had no control. That is not true. In the basic GP contact between GP surgeries and Health Boards, there is a clause stating that the GP contractor will abide by all existing Equality legislation. In a House of Commons discussion on premium rate surgery telephone numbers (14), in January 2012, The Minister of State, gave a clear and definitive response, saying that all Health Boards and PCT s were responsible for ensuring that all GP surgeries under their control abided by existing legislation and that the Department of Health had the requisite authority to enforce these regulations. Secondly, in a letter from the Equality and Human rights Commission (14), they state that all health boards have a responsibility under the Public Duty Equality Act to ensure that their GP surgeries comply with the Equality act. It seems fairly clear from all of the above evidence that Health Boards are simply too lazy to maintain adequate information about their GP Providers and hence to be in a position to enforce compliance with the relevant sections of the Equality Act. Many GP surgeries in Wales are drop in surgeries, needing no prior appointment. Whilst this is very useful, most of these surgeries are mornings only drop in surgeries and appointments still have to be made for afternoon/evening surgery. Most surgeries allow pre booking of appointments for up to 4 weeks ahead. A number of surgeries explicitly discourage home visit appointments; claiming that home visits are a thing of the past, take up far too much valuable GP time and that patients, contrary to popular belief, do not have any legal rights to a home visit service. All surgeries as in the rest of the U.K., experienced high appointment absenteeism rates, but no explanation was provided as to what action the surgery took against patients who failed to attend. One surgery permitted patients to cancel an appointment by SMS text messaging but refused to accept SMS text messaging for making appointments. Thanks to the pioneering efforts of the charity, Sign Health trials of on-line interpretations service are being piloted in some surgeries and hospitals in South wales. In those surgeries located in some of the most rural areas of Wales, no account was taken by the surgery of rural bus times and the inconvenience of having to call at the surgery to make

6 an appointment and then revisit the surgery for the GP appointment. This was a particular problem for deaf and disabled people. GP surgeries in Wales made appointment systems to suit the needs of the surgery rather than the socio-economic and disability needs of their particular patient populations. According to Wales Government statistics (15), 41.3% of all people in the Cardiff and Vale catchment area live alone. Blaenau, Gwent and Merthyr Tydfil have over 45% of aged 75+ persons living alone. Overall, Wales has an increasingly elderly population and a very high percentage of deaf /hearing impaired people in North and South Wales areas. Section 4: The GP Out-of Hours Service. It is a national disgrace that all GP out-of-hours services in the United Kingdom, are only accessible by telephone. The recent roll out of a 111 out of hours service number across England together with access to NHS Direct also being a telephone access service, highlights further the discriminatory way that the NHS treats deaf and hearing impaired people. We established, using Freedom of Information requests, that over 90 % of all out of hours GP centres have been combined with local accident and emergency centres. These accident and emergency centres do not have the staff to provide home visits. Those out of hours services which are run by private contractors to a health board, refused to give us the number ( if any) of visits made by an out of hours GP to a patient. To add insult to injury, one out of hours GP service was found to be using an 0844 premium rate telephone number. In a shocking report provided by the Cardiff University Primary Care unit (16), they state that the GP out of hours services in Wales are different in terms of whether they are provided by GP Co-operatives, Trusts (NHS hospitals), or for-profit companies. When contacting an out -of- hours service, it is not always clear to a patient what sort of service they are being referred to. The Cardiff report stated: Many service users who called services to speak to a doctor, reported waiting between 30 minutes and three hours Many patients reported waiting for up to eight hours for a home visit 21 patients in the study, reported that the doctor refused to come out to see them.

7 31 patients complained that the distance travelled to access the service was too far due to the size of the area covered by a service miles was the average distance reported by patients to travel to access the out-of-hours-service We are given to understand that the vast majority of out of hours GP service providers provide little more than general advice and that the principal advice given to patients, is to either visit their nearest accident and emergency service or wait till the following morning and contact their GP. From informal discussions with 4 major ambulance service providers, we are given to understand that there has been, over the past 12 months, a substantial increase in the number of calls to the 999 service, and that this increase does not reflect rising levels of ill health in the general population. On the contrary, there is a deep suspicion that far too many patients (both deaf and hearing-enabled) are simply avoiding using either their out of hours service or NHS Direct, and instead are dialling 999 on the simplest pretext. If this situation continues, there is a real danger that the ambulance services will be unable to cope with rising call levels, and that the health of those who urgently and genuinely need to access this service, will be seriously damaged. Section 5 User Personal Experiences. The health forums on the internet (17) are awash with complaints from both deaf and hearing- enabled patients. We have by in the past year received over 1500 complaints from people who were unable to access a service for various reasons. Here are a few of these complaints. All names have been changed to preserve the privacy of the correspondents. Peter lay dying, as his profoundly deaf wife Angela sat by his bedside, unable to use a telephone. All her neighbours were at work and her children were at school. By the time she got help from someone on the street and returned home, Peter had passed away. ( ) KK reported that his wife was telephoned by his GP to inform her that if her husband attended the surgery again on his own, he would be refused service as the GP was not prepared to spend most of the consultation writing down what was being said by him. (AOHL forum). Miss A, a student with serious health problems spends just over 13 a month accessing her GP 0844 telephone service. She is regularly put on hold for up to five minutes at a time. ( ) MR Z has missed 6 out-patient appointments at his local hospital and 3 GP surgery appointments, simply because he is unable to hear his name being called by the service provider. (Deaf Forum)

8 Mr C has been informed by his GP surgery that if he continues to make complaints about methods of accessing the service, he will be removed from the practice list. ( ) Section 6 Conclusions. From the evidence provided in this report, it seems clear, that in Wales, substantial deaf discrimination takes place in GP surgeries, hospitals and out-of -hours GP services, through the endemic failure of these providers to comply with the requirements of the Equality Act in terms of making reasonable adjustments to their services through providing alternative methods of accessing that service for both deaf and hearing impaired people. One major exception has been the work done by the charity Signhealth.org.uk. They have devised the SignTranslate on-line video interpreting service for use by GP surgeries and Hospitals. This has been trialled in Bridgend, Neath & Port Talbot. If you and I can have a simple video chat over the internet, why can GP surgeries and Outof-Hours Services not invest in internet based video technology. Racism is a criminal offence in the U.K. Disability discrimination is not. We would like to see sections of the Equality Act transferred from the Civil Law to the criminal law. This would enable the Crown Prosecution Service to take legal action against the widespread discrimination against deaf people. We also believe that many GP appointment systems do not take into account the needs of their patients in their particular area of the country. It is our recommendation that Health Boards and /or Primary Care Trusts need to undertake an in-depth study of the appointment needs for their GP surgeries and that GP practices need to engage more fully with their patients needs. We are of the view that the Wales Health Boards should stop allowing the out of hours GP services to be operated by private companies. Finally, we must raise the issue of deaf apathy. Far too few deaf people complain about the level of discrimination by health service providers and far too few deaf people take the time to familiarise themselves with deaf enhancement technology such as Screen phones, TEXTRELAY and SignTranslate on-line BSL Service. Deaf people can no longer sit back and expect deaf charities to look after their needs. We return to the question posed at the beginning of this report by The Equality and Human Rights Commission; namely How Fair is Britain.

9 It is the central argument of this report that in the case of deaf and hearing impaired people, Britain is very unfair in the ways in which it provides and delivers health access care and systems to some of its most vulnerable citizens. Copyright. November 2012 IAN CRIMOND References: 1 Equality Act ( Equality Act) Disability Discrimination Act 3 Equality Act section 20. Need to make reasonable adjustments Barnet Access Health Report : Barnet Borough Council Report why do you keep missing me House of Commons January 2012 they work for you report (Hansard)

10 Department of Primary care and Public Health: University of Cardiff Report 17. Internet forums: deaf-talk; action on hearing loss; Yahoo ( deaf U.K - chat groups) 18.