The ATR REPORT 2013

THE ATR REPORT

An User examination of the current status of access for communicational-impaired patients in South Wales, with particular emphasis on those with hearing loss.

The ATR REPORT 2013

An Introduction:

When the NHS was launched by the minister of health, Aneurin Bevan, on July 5 1948, it was based on three core principles: (1) that it meet the needs of everyone (2) that it be free at the point of delivery (3) that it be based on clinical need, not ability to pay
Crisis NHS(Wales), is a paper researched by ATR to show how the NHS in Wales, not only failed at the very first stage, for those of us with hearing loss, but continues to do so even after 65 years. Who is ATR ? ATR is produced by an welsh deaf blogger, living in Wales, and a profoundly deaf campaigner, who has investigated access for communication-impaired in Wales, covering voluntary, official, and charitable involvement of the communicationally impaired, for 15 years, and as user of NHS services. ATR makes no apologies for the seriousness of communicating the access issue difficulties, nor reserves criticisms that covers every major facet of support in Health, and urges anyone with health interests primary, to lobby Depts of Health, to offer this sector, the equal access to health provision, most hearing enjoy, and importantly, simply to obey the law.. Thank You. ATR.

The ATR REPORT 2013

BACKGROUND: In Wales today, it is said 76% of deaf people and others with hearing and other communication impairments, have little or no formal nor official access to the Welsh NHS, unless they provide it themselves. It's a little like telling an amputee to bring their own legs in, or walk without them, and there can be few other patients in the NHS expected to underpin law-breaking by a state service. Currently service provision for those with communication impairments are at an all time low. After an initial advance in access from 1995, when the disability Law was first enacted, access greatly improved on many fronts for the hearing-impaired sectors. Then in 2003 it rapidly went into reverse, as cost-cutting was introduced on a large scale by various governments, the disabled and deaf, and hearing-impaired were the first sectors to find their access being withdrawn. It is as if their right to access the NHS had never existed. Local services vanished overnight, out of hours services were always poorly accessible, and then they too vanished.... It is the intention of this report to highlight areas that need urgent addressing, and offer some recommendations that the NHS in Wales might consider taking up. Which ATR hopes is viewed as constructive. Out Of Hours provision for the communicationally impaired: O.O.H. (Out of Hours), services etc. Basically it is a service staffed mainly by free-lance locums. (Locums provide a ready means for
organizations to fill positions that are either only temporarily empty (during sickness, leave or for other reasons) or for which no long-term funding is available. Locuming also allows a professional to try (and get experienced in) a wide range of work environments or specialisation fields which a permanent employee may not encounter.) Locums can be sub contracted to the

NHS, and surgeries, as such it has proven difficult to contact the NHS itself over service access provision re communication support that is poor, or non-extant. Deaf people e.g. can get referred to the sub contractors, or to the
3

The ATR REPORT 2013

surgery/NHS itself, but with no real acceptances of whose responsibility it is, for providing access. This the 'ping pong' effect, with communicationally impaired the ball. Some Locums may not even based in the UK, and come from e.g. Germany/France other parts of Europe e.g. and commute to the UK. It is an 'No frills' service, and with no real access provision either. There currently appears to be no regular or organised consultation, via patients themselves, who could readily identify the problem, and offer up ways of addressing shortfalls, or to address bad or nonextant practices. Patient self-help groups themselves, offered little or no access for a deaf patient to contribute in many areas, so no avenue to complain, or ask is there for them to utilise. GP's, OOH locums, Consultant and other primary care staff communication issues: Can further complicate issues. The subject matter can be sensitive to ethic and other areas, but does need addressing in the light the communicationally-impaired sector is not getting access to the NHS in respect of rights of other sectors. The 'pecking order' of these rights, has left those with hearing loss at the bottom, and poor communication access to the NHS, has prevented them being able to raise issues of poor access.. E.G.. British sign language interpreters with an locum. A deaf patient can still experience difficulties following a poor English speaking Dr/Nurse. For the lip-reading patient, this means any skill gained can be invalidated on the spot and by default. Interpreters are reported to have curtailed clinical support to defend patient rights, as they were themselves unable to follow what was being said, so could not pass on to the deaf person courses of treatment, or, diagnosis of issue. Recommendations: (A) An avenue for addressing communication issues between deaf and HI patients and medical staff, to be set up to avoid misunderstanding, and if possible, a method of changing diagnosing/nursing staff who present difficulties with deaf or their professional support. This is particularly a moot point, if the deaf
4

The ATR REPORT 2013

patient e.g. is reliant on lip-reading alone, then an inability to lipread medical staff, poses serious dangers to treatment and to diagnosis. It would not be practical for a deaf patient dependent on lip-reading, attending, or continuing to participate in an appointment. (B) Deaf/HI need an sympathetic NHS exemption, that takes into account communication practical problems, not only by virtue of their loss, but by virtue of recognising some medical staff can present communication issues by default, regardless if the medical staff are of ethnic or foreign extractions, or even gender. (C) Medical staff who have a lot of facial hair, beards/moustaches/wear face veils etc, should be avoided if possible, as these pose physical barriers to the lip-reader, by masking mouth patterns.
WHO PAYS ?

O.O.H. Locums, claim they are paid to treat patients, but they are not paid any fees to include access as required, nor, have any formal listing or access contact points to get them, nor posses technology to facilitate effective OOH services, the deaf and communicationally impaired, can utilise effectively. While there is a random form of UK localised access, it is piecemeal and charitydependent, and not available widely to the differing hearing loss sectors, it is a complete post-code driven lottery. Locums did not feel access was their responsibility. Generally if they encounter issues of patients with hearing loss, they may not turn up at all, or, if the deaf contacting them are experiencing difficulty, Locums can hang up on them via misunderstandings. Locums may inform them to go to their own GP next day, or, to contact an on-line area (Such as NHS Direct), If they can, but this is a lottery too. Only Scotland has any sort of effective BSL video set up in the UK, but again little or no set up for any other hearingimpaired person. There was huge unawareness, of what types of access were used. Recommendations: (a) Fees paid to Locums, to include any communication support the
5

The ATR REPORT 2013

Dr and patient will need to treat that patient fairly and effectively. (b) Locums issued with viable interpreter and other contact points, that can be utilised 24/7. To contain lip-speaker/sign language/text support/other (As required). (c) Locums to be made aware of technologies, and issued with viable technologies, to facilitate patient calls, this can be a saving and avoid a personal attendance, that may not be required. But NOT, used as an alternative to that, if the patient obviously requires a personal visit.. (d) Locums NOT to rely on patients having access to online technologies, (Or NHS direct).

Referring patients elsewhere by OOH Services: Deaf patients may be told by a locum told to go to A&E Depts at their local hospital, but this is contrary to NHS official advice, which states they don't want these patients attending vital emergency A&E areas, with what might not be an issue hospitals need to treat, and could be treated by a GP anyway. There will certainly be no communication support in an ambulance, so this poses problems in transit care too. Recommendations: (a) Locums to ensure that when referring a deaf patient to A&E depts, a hospital is aware that patient will require communication support. (b) Ambulance and A&E depts to be made aware where support is, and to train ambulance staff if possible, in basic communication techniques with patients who have hearing loss. It can all become rapidly academic and risky to apply any treatment with no effective way of communicating. There is currently no such thing as 24/7 health coverage for the deaf.
6

The ATR REPORT 2013

Recommendations: (a) That NHS (Wales) explores the option of setting up a 'central pool' of communication support staff to offer 24/7 cover for communicationally impaired patients. (b) NHS (Wales), considers sharing expertise and costs of support across the emergency services so vital services are able to call on that support as and when regardless of Dept. accessed.

GP/Surgery/Clincal areas: Primarily, a deaf patient, with an urgent condition to address, currently has to provide their own help, turn up with none, or try to struggle with it, else abandon the visit altogether, this is a totally unsatisfactory and stressful situation for any patient.

Recommendations: (a) Medical appointment areas must consult a patient, and provide suitable response access, prior to confirming any appointment, to determine support need, then set that up. (b) To bear in mind some deaf patients may have issues reading letters, or understanding English grammar.. (c) No appointment to be confirmed until support need is established, and in place.
Digitally Sharing Information: In identifying treatment with automatic access provision in Surgeries, OOH services, home nursing areas, therapy areas etc, and hospitals, digital patient file sharing is still haphazard and totally incomplete regarding a patient's need for support to follow. Recommendations:
7

The ATR REPORT 2013

(1) A patient's need requirement format, automatically included as well as patient medical details. (2) How it can be obtained, to ensure that when a patient is referred to the NHS, everything is in place to facilitate effective diagnosis and treatment. (3) To consider a deaf patient may also want to use video access (e.g. via BSL relay interpretation). (4) To offer SMS (Mobile), Fax, smart-phone, and e-mail access points, as these are standard means deaf and HI use to currently communicate to anyone not deaf. Quite often there is no format on the digital record, for anything but an oral telephone number. GP Surgery access: GP surgeries are legally obliged to provide access for those with any form of hearing loss that need it, to be on par terms with hearing counterparts. CTD.. Whilst it is illegal for Surgical practices to fail to supply it, there is still widespread unawareness of who pays, and of Dr's who are failing to notify own appointments staff. Recommendations: (a) GP's update own records on patient communication need requirement and known effective means of communicating appointments to them. (b) To ensure no appointments are made without support in place. (c) That GPs Wales-wide consider pooling resources so area surgeries have access to the support their patient requires, based on Hospital/emergency suggestion. Again sharing of costs is a good way of setting up and system easily available to all.

It is important to note, that those with a communication impairment, would prefer to access the same services as everyone else, and do not want specialised services that tend to isolate them instead.
8

The ATR REPORT 2013

Bad Practices in GP surgeries GP areas are increasingly being identified as presenting frustrations re access provision, that can result in adopting practices aimed at deaf and HI, that put them under unfair stresses, and pressures, to provide their own support, regardless if it is non-professional, nonneutral, under-age children, or even neighbours. This is unacceptable.

Recommendations: (1) To always ensure a patient is attending the surgery with appropriate and professional help. (2) To ensure patient is fully aware, that help is considered effective and appropriate by both parties (i.e. Dr, and Patient) (3) The GP to also ensure sufficient time is allowed for diagnosis, which atypically can be 3 or 4 times longer than a hearing patient may require. (4) To ensure a patient is made aware when their name is called, by installing visual alerts, and back up systems.
NHS Hospital ward Access: The NHS hospital still doesn't provide automatic access via their own 'in house' provisions. Medical ward staff, and deaf patients, have attempted to contact patient liaison areas, that try to arrange on-ward access, and find they have closed with no-one knowing about it, or staff have been made redundant to save money. One hospital had removed patient liasion services for over 14 months without informing anyone. Hospital ward sisters often did not know if a patient liaison area was at their own hospital. Recommendations:

(1) All Hospital wards and day/out-patient clinics, to be made aware where a patients support is to be obtained. (2) On ward Dr's and nurses to not attempt diagnosis communications
9

The ATR REPORT 2013

without any effective two-way communications in place. This induces high ;patient stress. (3) Wards to have contact numbers at all times updated.
Communication types and end users: There as many variations of communication impairments, and loss degree, as there are people with them, and for the purposes of this paper, ATR can only generalise, via basic means observed. Types (General): Lip-readers, sign language users, hard of hearing with hearing aids, deaf with speech, deaf with none viable, deaf-blind, speechimpaired, learning difficulties, and increasingly, cochlear implanted users, (whose support is not as yet clearly verified, the technology and implantation, having overtaken the support requirement definition). Each communication area has its own specifications of support use, and also user ability variation, that demands its own specialised support The purpose of this paper is to ensure, only professionals are used, to limit as far as is possible issues presented by those with communication problems, and to help both Dr, Nurse, and Patient... Other 'help' Communication-impaired (deaf people particularly), may want to take family with them, that is their right, but it is not valid to then expect that family support to act as professional,or untrained translators as a result. They are there to support the patient, not, to act as professional translators, patient well-being and privacy is still paramount. Asking such support to translate must be seen, as violating patient privacy even if the deaf patient wants them there. Errors thus caused by inefficient or incorrect translation, can mean possible litigations against the NHS. Simply agreeing with patient choice, does not make the NHS exempt from their legal
10

The ATR REPORT 2013

responsibilities if something goes wrong, and is not a cheap option to supplying proper, professional help.. You have also to assume many do not want family involved in their primary health decisions e.g. and respect that patients right. Also to take into account, that whilst an communication-impaired patient may want family/friend support, that support may well be able to follow 'clinical speak' adequately either. Absolutely no usage of under age of consent children is permissible, this in violation of the 1984 child Act. Need Assessment ? Ideally patients should undergo assessment of support need,and this should be considered by the NHS areas in it's entirety, but the individuals choice of assessor should also be considered relevant. Often patients may not be aware what professional support is there, or even what best suits them, as many have relied on nonprofessional help for years, they may well be unaware who has been making most decisions ! 'Preference' is order of the politically correct day, but may well not address real or identified need Many with hearing loss, also overstate their own ability to follow, to appear less of a problem to the health staff (Or others). It is a failing, but a human, recognised, and fully understandable one. It is never done to deceive. Its based on a reluctance to look vulnerable, and needs medical staff to adapt to, and to empathise, without being judgemental. Recommendations: (a) Staff should always adopt an 'belt and bracer' approach to ensure as well as they are able, patients know what is happening. Repeating areas that they can visibly see deaf look puzzled with, and with emphasis on important points. (b) To supply written back up (Where applicable), of medication times, amounts, treatments to be adopted etc.. and to offer an easy contyact point for enquiries.
11

The ATR REPORT 2013

(c) To not assume the patient always fully understands what is on the label. (d) To reduce 'clinical-speak', and to simplify as far as possible.

Some Provision anomalies:

Some sign language user provision is getting unbalanced profile at the expense of other HI requirement service provision. There is still a general a lack of awareness regarding what support deaf or hard of hearing actually need, or use. Problems E.G. Loops, being provided deaf cannot use. Sign language support offered to people who don't sign. No text or lip-speaking support for those who struggle with both. Common and basic assumptions like "All deaf people use sign language,, or all HI have hearing aids they can use....". MUST be avoided. They are in most part completely inaccurate, as every person is different. Communication hints and Blips: Problems can occur with hearing aids at any time. Just because a patient is wearing one, does not mean they can hear everything you say, some may hear very little at all even with very powerful hearing aids. Some are so small you may not even see them unless up close. Stress, can lower a person's ability to concentrate, as can background noise prevent their effective use. Adopt the aforementioned 'belt and braces' approach at all times, do not rely on a 'Nod' of assent, or a negative shake of the head from the patient, unless you feel completely satisfied they understood. A nod is no guide to what they may have taken in, you may need to
12

The ATR REPORT 2013

reiterate and often backtrack to determine what they actually did. Again, use discreet means to do this to avoid patient embarrassments. With hearing loss, assume nothing. Speaking/hearing ? A false reliance on a deaf or HoH persons speaking voice, belies the fact they maybe cannot hear at all, this is a number one serious issue of communications with a deaf person with a good speaking voice, (or even a person with an hearing aid).
How are You ? Half-past two.. is an old joke, but it is unhelpful in a

diagnosis. It is relatively easy for a Dr to determine at the onset, how much a patient is actually hearing, by starting off with nonmedical conversations to determine if they are keeping up. Tact is essential. Ensuring you are reasonably aware of the patients educational ability too, avoids talking over their head', just keep it simple. Psychologically, hearing persons, (be they medical staff or anyone else), will always associate good speech, WITH effective hearing as a subconscious reaction, and quite wrongly, this is 'like allying to like' that isn't ! Staff should never assume a speaking deaf person can also hear, even if it looks like a deaf patient is, never assume a good lip-reader, is hearing either, (refer back to previous assumptions!). You can't see hearing loss, but never assume there isn't any. Online Access: Access online is a random and chaotic modus that is re-hashed every year. The NHS is not a static organisation and under constant change and has many fragmented re-organisations, sub-divisions, and sub contractors. Deaf/HI experience, suggest many NHS websites are not being updated, and deliberately frustrate deaf/HI attempts to get responses on them. A lot of requests never get answered, others re-directed to wrong areas, but mostly, finding the correct Dept. is almost impossible.

Many NHS websites are difficult to negotiate for deaf and hard of
13

The ATR REPORT 2013

hearing people, some had data 6 years old or more, many had no deaf or HI access listed at all, or you couldn't find it. Many services had simply ceased to exist but still listed suggesting there was more access than there really is. Informational Media: BSL videos are coming out, but often aren't accessible unless captioned and subtitled. Also, BSL only videos suggest only one thing, there are only BSL using patients, and no-one else, or only that sector requires accessible information. Others have spoken commentaries, deaf cannot follow, nor can people with hearing aids at times. There is no awareness, that those with hearing loss use ,and need both mediums to follow, and possibly lip-speakers too, to assist the lip-reader, who is currently and totally ignored. Not a single UK website listed lip-speaking support, or speech to text support. Patients can be forgiven for thinking that all deaf really do sign and nothing else.

Appointment systems:
Too many appointment systems are being centralised without any patient access knowledge, clinics and GP's are also failing to contact each other regularly so updating sometimes never takes place, is an afterthought, for the end user to sort out. Some problems identified were: (1) Phone numbers, deaf cannot use,

(2) Box numbers that don't get replies, or difficult for deaf to contact, (3) Mobile numbers supplied that would not take an SMS (text) call, or receive them. Many resulted in serious delays, e.g. some deaf diabetics having to wait another year for an eye retina scan after being unable to make the call for support.

14

The ATR REPORT 2013

Some bad Practice by Appointment Centres: There were demands that deaf or HI patients allocate themselves 'hearing carers', so the NHS didn't have to deal direct with them. This was a direct refusal to empower a deaf patient, and a direct abuse of the NHS Act. There was also no demand these 'carers' needed any qualification, police scrutiny, official carers have to undergo, and some hearing relatives of deaf people reported they were harassed by appointment centres demanding they support the patient. Home Nursing Help: Home nursing has virtually ceased for the deaf patient entirely, primarily because they receive no funding for communication support to do the job, this e.g. made huge issues for deaf diabetics needing constant monitoring and health support, if a home nurse was available thy had no effective way of talking to the patient, this added stress, as well as the patient not always knowing about advice given.. Mental Health: Probably the worst accessible service in Wales. Mental Health support/diagnosis areas for those with hearing loss were seriously lacking in all areas, with few exceptions. Wales NHS basically, 'exported' deaf and HI MH patients to England, because no specialisations exist, or have been set up, certainly if they are, few know about it. GP's had difficulty locating specialised services, and communication-impaired were not allowed access, even with professional support, to utilise hearing support provisions locally. This divorcesddeaf and other HI patients, from vital family help and peer support, so their situation further deteriorates. They can take little comfort in the fact their hearing next-door neighbour CAN have this localised help, and they can't, and they
15

The ATR REPORT 2013

are 'exiled' to areas totally unfamiliar to them and they are isolated. E.G. 40% of deaf children suffer this issue, and getting it addressed and support in place locally is not extant in Wales. Again those with hearing loss, prefer to utilise same services as anyone else, and to avoid specialisations that will just further isolate them.

Contacting the Deaf/making appointments (General): Means of contacting deaf/HI patients is completely based on an assumption they are: (A) All hearing and/or they are (B) All literate. It is suggested such is the lack of established and organised support for communication-impaired in Wales, patients who speak no English got more help than they did. GP's atypically, list up to 58 area language access support points, (Kent e.g. had over a 100), but none listed for BSL, speech to text, or lip-speaking, for deaf and HI need. Factually cost can be an issue, In Wales e.g. speech to text operators were just 2, for a potential 300,000 HI, with fees said to be in excess of 500 plus, and waiting lists making it pointless to apply, if support was needed quickly. Deaf patients families were often unfairly contacted, to support their deaf relatives, despite those showing willing, had lost work time, and sometimes jobs doing it, but it ignored deaf not having access to that type of support. All designed to make the deaf or HI patient to undergo stress, feel useless, and of no account, to be 'penalised' for having poor or no hearing, whilst at the mercy of people unscrutinised, unqualified, and mostly unable to display any communication qualification to help them. Where deaf/HI patients have responded, or refused to do this, they
16

The ATR REPORT 2013

were accused of being unhelpful. Or even obstructive.

Gender differences and Deaf/HI patients:

Like hearing patients, the NHS also provided difficulties in deaf male patients with wishes for gender clinical support options. E.G. making deaf males use female clinical specialists in sensitive areas like urology/sexual, whilst women were not expected to do this. There is gender inequality in the NHS, which is also illegal. This can and does lead to deaf males not taking up consultations, or embarrassing and humiliating them unfairly.

Deaf males who asked for a male nurse or Dr, were told they had no right to ask for them. Private/Not ? (Chemists, Gps, Opticians, dentists) Many dentists, are private, they can pick and choose what patients they take, and mostly do, they generally don't provide any communication services, or feel they shouldn't have to. That leaves many deaf and other communication-impaired, to the vagaries of 'state' NHS provisions, access then can be lengthy, waiting lists many times longer than any other. We are talking years in some cases, not weeks. Recommendations: (1) Dentists who wear face masks as a norm, will not be lip-read by a patient, this is obvious a fact, always ensure the patient understands treatment prior to commencement. Consider sign support access has to be in eye-line also. Opticians are mostly private too, and they too are not bound to provide any support, the state option (NHS), is also at a loss as to supplying provision, as waiting times are also many many months or years for treatment, deaf are hugely at disadvantage to any other sector in this respect. With waiting times predictable 3 or 4 times longer than anyone else, and treatment times more lengthy.

17

The ATR REPORT 2013

Recommendations:

(1) Lighting is crucial, both for deaf lip-readers, and for deaf relying on sign language. If lights are turned down low, or off behind the optician, he/she may not be understood, ensure lighting allows for patient to see faces, AND their support.
Utilising chemists has long been an issue ignored, but as they are said to be able to offer advice on minor health issues, and acrosscounter medication issues. However, consultation at a chemists is fraught with major communication problems too. No legal provision exist currently (Or does it ?), for chemists to offer communication support, yet the law demands they must offer disability access, e.g. a wider door or a ramp for a wheelchair, Braille for the blind. High staff turnovers, can also mean aware staff have left, and there is no-one else. Definitions ? Does communication impairment come under the term 'disability' ? Or does it only apply in so far as providing a loop for the hearing aid wearer, and a wheelchair ramp ? There is wholesale ignoring of the access, and human rights laws in regards to those communicationally impaired, to health provisions at every level in our society, and there is little desire for real enforcement. Thank You for reading this paper. suggestions and comment. ATR. January 2013 Copyright reserved. Website:http://attherimmm.blogspot.co.uk/ ATR welcomes constructive

18