This blog post includes all documents/links I have sent to Enfield CCG.
The first three documents are all posts or adaptations of posts to be found in individual posts on this blog. I have republished them together here for ease of access and to make tweeting the link to them easier and hence more efficient.
If you scroll down below document 5 there are open covering letters I have sent to specific members of Enfield CCG (Unfortunately, some of the formatting has altered in copying and pasting from Google Docs. I have tried to correct it without success.)
Please feel free to use any documents I have written and published on this blog Bliss 2 Hear if you think they may help in the fight to retain provision of hearing aids on the NHS
Document 1
Dear CCG Governing Body Members,
Proposal to limit NHS hearing aid provision
Open letter to whom it may concern
With reference to your proposal to limit the provision of NHS hearing aids please consider the following:
People often do not appreciate the true impact that hearing loss can have on others.
The impact of hearing loss is very individual.
I have it on good authority from a senior audiologist that two patients could be assessed as having the same hearing loss but that the impact of that hearing loss on those two individuals could be wildly different.
This means that measuring thresholds at which people can hear certain frequencies is not enough to determine whether or not someone could benefit from hearing aids. Please see WHO advice here: http://www.who.int/pbd/deafness/hearing_impairment_grades/en/ "Note: While audiometric descriptors may provide a useful summary of an individual’s hearing thresholds, they should not be used as the sole determinant for the provision of hearing aids. The ability to detect pure tones using earphones in a quiet environment is not in itself a reliable indicator of hearing disability. Audiometric descriptors alone should not be used as the measure of difficulty experienced with communication in background noise, the primary complaint of individuals with hearing loss."
People can experience more/less success when listening to different people.
This is NOT ‘selective’ hearing in the way that is often joked about.
It IS ‘selective’ in that different people speak at different frequencies and therefore are more/less understandable depending on the frequencies with which patients have a problem.
Eg: People with high frequency loss can often determine men’s speech better than women’s because men tend to have lower pitched voices than women. There are always exceptions to this, however.
The exhausting nature of hearing loss should not be underestimated.
Hearing Loss can lead to people distancing themselves - or being distanced by others - from conversations, becoming isolated, depressed and experiencing accelerated development of dementia.
Many people with good hearing become frustrated if asked to repeat things for people who have not heard/understood the first, second and possible subsequent times.
Do not assume that those who nod and smile have understood what you have said. It is highly likely they may be too embarrassed to ask for further repetition.
Current advice is that people should seek help with hearing loss sooner rather than later before the difference between noise levels heard with and without hearing aids becomes too great for patients to cope with.
Department of Health & NHS England Action Plan on Hearing Loss (23rd March 2015) states that Objective 2 (Page 20) is to “ensure that all people with hearing loss are diagnosed early …… and that they are managed effectively once diagnosed.”
Page 22 states, “Hearing is a major factor in maintaining independence and achieving healthy ageing.”
The link between hearing loss and dementia is also mentioned. There is a recognised pathway - hearing loss - isolation - depression - dementia.
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I have spoken with many people who are reluctant to wear their hearing aids.
According to Action on Hearing Loss It takes - on average - 10 years for people to address their hearing loss. When they finally admit that they need help it is because they NEED help.
I understand that the government is cutting your budget and that savings have to be made. However, please consider the perceived savings you may make - in denying hearing aids to those patients for whom some arbitrary scoring system has determined a level of hearing loss and compare it with the likely expense of dealing with possible health, quality of life and independence problems that could ensue if patients continue along the pathway: hearing loss, isolation, depression and accelerated development of dementia.
I suffer from hearing loss and whilst there are certain strategies that can be employed to help with speech understanding the overwhelmingly successful one is my NHS pair of hearing aids. Hearing aids are my lifeline, socially and in my voluntary work. They will be a lifeline to others, too.
Please allow audiologists - together with their patients - to decide who will benefit from and be fitted with hearing aids.
Yours sincerely,
Kathleen Hill
Member of Wyre Forest Patient Participation Groups (PPGs)
Member of NHS Wyre Forest CCG Membership Scheme
Twitter @kathleenlhill
Updated 15th June 2017
Document 2
Manage without Hearing Aids?
Many, many times people have told me that they don't need hearing aids because they 'manage' without. I 'managed' for many years too.
I tried to ensure:
I was facing the person/people with whom I was talking
I got a seat in the front row at meetings
I had my 'better' ear nearest the source of the speech
it was not obvious that I was cupping my hand behind my ear
I was oblivious to the fact that there were changes happening in my brain to enable me to understand speech whilst I thought my ears were 'managing'.
I did not appreciate that my brain had to work harder to compensate for the fact that my ears were not working at optimum efficiency. (So that is why I was always so tired in the evenings!)
To understand why the brain has to work harder if you have even 'just mild' hearing loss see ‘The Importance of Hearing Aids - Getting the Message Across to Clinical Commissioning Groups’ attached.
I had no idea that as long ago as 1989 it was suspected that there was a link between hearing loss and dementia.
Think about it.
The full document can be found here:
Other articles concerning the association between hearing loss, depression and dementia can be found here:
Document 3
The Importance of Hearing Aids
Getting the Message Across to Clinical Commissioning Groups
The following article was originally written for - and published on - Action on Hearing Loss’s website. https://www.actiononhearingloss.org.uk/community/blogs/our-guest-blog/the-importance-of-hearing-aids.aspx The letters and sounds that someone with ‘mild’ high frequency hearing loss (most often associated with age/noise related hearing loss) might struggle to hear have been removed in an attempt to offer some insight into the difficulties those with impaired hearing might face. It should be remembered that whilst readers can read and work out meaning at their own individual pace people do not enjoy that luxury in real time verbal conversations. Lipreading is not a substitute for hearing. Much of it is guesswork - filling in the gaps left by sounds made without moving the lips. Add the distraction of background noise to the mix and for many the struggle becomes too great. Isolation, depression and dementia (perceived or real) are very significant threats.
Please read on. At the end there are a few questions you may like to ponder and answer.
I am a -earing aid wearer wi-- mild to moderate, -igh -re-uen-y -earing lo--. I -ave worn digi-al N-- -earing aid- -or --e la-t eight year-. To -ay --at --ey -ave tran--ormed my li-e i- no e-aggeration.
Loo-ing ba-- over my -re--earing aid year- I wonder -ow I managed. A- a middle ---ool tea--er in charge of the -E de-artment but tea--ing -al- my timetable in -la--room -ubje-t- I -tru--led -on-tantly. -earing what --ildren were -aying in the gym or on --e -ield wa- a -er-etual -roblem and I wa- re-eatedly -om-laining about --ildren mumbling and --ea-ing indi-tin-tly in the -la--room. -ta-- meeting- were a nightmare. My brain -ad to wor- overtime to try to -ee- tra-- of di--u----ns --at I wa- too o-ten relu-tant to join in a- I -ould not be -ure what -ad been -aid. Al--ough I did not reali-e it at --e time it -a- be-ome a--arent --at --e --eer e--ort of ma-ing -en-e of -onver-a---n --roughout --e day wa- what -au-ed me to -lum- into a -oma-li-e -lee- every evening - --u- robbing me of true re-t and rela-ation a-tivitie-. On o--a-ion- when I -tarted wat--ing a televi---n -ro-ramme I o-ten had to a-- family member- what had been -aid only to be told --at I --ould -ay -ull atten--on. I rarely -aw --e end- of -ro-ramme-.
It i- only in retirement -in-e re-eiving my -ir-t N-- -earing aid- --at I -ully a--re-iate ju-t -ow -ard --e -tru--le wa- during my wor-ing year-. No lon-er do I need --e -ubtitle- when wat--ing televi---n. Now I -an enjoy -onver-a---n- wi-- -amily member-, -riend- and a--uaintan-e- wi--out re-eatedly -aving to a-- for re-eti---n and -u--ering --e en-uing embarra--ment of -till not -aving -eard -ro-erly. --ere are only -o many time- one -an a-- for re-eti---n and --ere i- alway- --e added worry of ini-iating t-e o-ten uttered di-mi--ive re--on-e, "Oh! It doe-n't matter." Only re-i-ient- of --o-e -ew word- will truly under-tand --e -ru-tra---n --ey -au-e. --e -on-tant worry about being -iltered out of --e -rou- whil-t al-o dealing wi-- --e -train of trying to -tay -onne-ted i- now -one.
The -train on -amily member- and other- --ould not be undere-timated. A -riend told me --at -eo-le wi-- -earing lo-- --ould do -omething about it a- it wa- e-tremely -ru-trating to have to re-eat --ing- -o much. I wa- an-ry wi-- her at --e time but on re-le-tion she did me a -avour. -onver-a---n i- de-igned to -low and re-eated re-eti---n --oil- --e -low. It i- diffi-ult to move on when -on-tantly moving ba--. -ontinuity is di-ru-ted and bo-- --e -earing and the -earing im-aired be-ome -ru-trated. --i- i- e--a-erbated on --e tele--one - a -om-lete nightmare -or --e -ard of -earing and --o-e trying to -ommuni-ate with --em.
Retirement o--ers relea-e from a li-etime of -lo-ely -tru-tured a-tivitie- but al-o -re-ent- challenge- o- it- own. -ow will we ju-ti-y our -ontinued e-i-ten-e in --e world? I de-ided to be-ome involved in lo-al -a---nt-' -ommittee-. Why -ut my-elf --rough --e a-ony o- yet more meeting-? I am a -ommuni-ator and I wanted to -ontinue to -ontribute to -o-iety. De--ite -ur--er deteriora---n in my -earing my N-- -earing aid- allow me to do ju-t --at. Deva-tated i- a much overu-ed word --e-e day- but it -ully de--ribe- -ow I would -eel wi--out my -earing aid-. -o---l out-a-t would not be too -tro-- a de--rip---n. (I a-tually --ought one o- my -even -rand--ildren had a -eriou- --ee-- im-ediment a- I -ould not under-tand any--ing he -aid. Thi- -ear -roved un-ounded on-e I re-eived my -earing aid-.)
A- a wal-er and a -y-li-t I rely on my -earing aid- to help alert me to -oten---l -azard-
a--o-iated wi-- tho-e a-tivitie-. In addition devi-e- -u-- a- doorbell-, timer- and alarm- would be inaudible wi--out --em.
I -eel driven to -ee- u- --e-ight again-t any -oten---l -ut- in N-- -earing -ervice-. I, and -o many like me, would become -eriou-ly -o--ally i-olated and vulnerable wi-- all --e o--er -roblem-
a--o-iated wi-- bei-- ex-luded from normal everyday a-tivitie- --at tho-e wi--out -earing -roblem- ta-e -or -ranted.
How far did you get?
If you gave up part way through could you explain why?
How do you feel?
Were you able to read at your normal pace?
Would you like all your reading matter to be like this?
If the answers to 3 and 4 were, “No,” would you welcome help to overcome these problems?
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During conversation people with hearing loss rely on their hearing aids to help fill in the gaps.
Without hearing aids whilst the brain struggles to decipher words orally the conversation may be moving on resulting in further gaps in comprehension. Eventually the effort becomes too great and many are reduced to smiling and nodding - or, worse, total withdrawal. Isolation.
Hearing loss is a complex issue. It is not just about turning up the volume. People who seek help need help. Please let patients and audiologists decide who will benefit from hearing aids.
Kathleen Hill
Member of:
GP PPG, Wyre Forest Patients’ Group,
NHS Wyre Forest CCG Membership Scheme
Minor updates 5th June 2017
***** On 15th February 2017 Action on Hearing Loss asked me to answer some questions about my experiences of hearing loss on BBC Radio 4’s Woman’s Hour. Following this I was asked if I would allow Action on Hearing Loss to quote from this blog post in a presentation designed to help people understand hearing loss. I am really pleased that I seem to be on the right track. *****
The Importance of Hearing Aids
Original Action on Hearing Loss Blog Article Posted on: Monday, February 2, 2015 by Lola Olson
I am a hearing aid wearer with mild to moderate, high frequency hearing loss. I have worn digital NHS hearing aids for the last eight years. To say that they have transformed my life is no exaggeration.
Looking back over my pre-hearing aid years I wonder how I managed. As a middle school teacher in charge of the PE department but teaching half my timetable in classroom subjects I struggled constantly. Hearing what children were saying in the gym or on the field was a perpetual problem and I was repeatedly complaining about children mumbling and speaking indistinctly in the classroom. Staff meetings were a nightmare. My brain had to work overtime to try to keep track of discussions that I was too often reluctant to join in as I could not be sure what had been said. Although I did not realise it at the time it has become apparent that the sheer effort of making sense of conversation throughout the day was what caused me to slump into a coma-like sleep every evening - thus robbing me of true rest and relaxation activities. On occasions when I started watching a television programme I often had to ask family members what had been said only to be told that I should pay full attention. I rarely saw the end of programmes.
It is only in retirement since receiving my first NHS hearing aids that I fully appreciate just how hard the struggle was during my working years. No longer do I need the subtitles when watching television. Now I can enjoy conversations with family members, friends and acquaintances without repeatedly having to ask for repetition and suffering the ensuing embarrassment of still not having heard properly. There are only so many times one can ask for repetition and there is always the added worry of instigating the often uttered dismissive response, "Oh! It doesn't matter." Only recipients of those few words will truly understand the frustration they cause. The constant worry about being filtered out of the group whilst also dealing with the strain of trying to stay connected is now gone.
The strain on family members and others should not be underestimated. A friend told me that people with hearing loss should do something about it as it was extremely frustrating to have to repeat things so much. I was angry with her at the time but on reflection she did me a favour. Conversation is designed to flow and repeated repetition spoils the flow. It is difficult to move on when constantly moving back. Continuity is disrupted and both the hearing and the hearing impaired become frustrated. This is exacerbated on the telephone - a complete nightmare for the hard of hearing and those trying to communicate with them.
Retirement offers release from a lifetime of closely structured activities but also presents challenges of its own. How will we justify our continued existence in the world? I decided to become involved in local patients' committees. Why put myself through the agony of yet more meetings? I am a communicator and I wanted to continue to contribute to society. Despite further deterioration in my hearing my NHS hearing aids allow me to do just that. Devastated is a much overused word these days but it fully describes how I would feel without my hearing aids. Social outcast would not be too strong a description. (I actually thought one of my seven grandchildren had a serious speech impediment as I could not understand anything he said. This fear proved unfounded once I received my hearing aids.)
As a walker and a cyclist I rely on my hearing aids to help alert me to potential hazards associated with those activities. In addition devices such as doorbells, timers and alarms would be inaudible without them.
I feel driven to keep up the fight against any potential cuts in NHS hearing services. I, and so many like me, would become seriously socially isolated and vulnerable with all the other problems associated with being excluded from normal everyday activities that those without hearing problems take for granted.
Kathleen Hill
Member of GP PPG, Wyre Forest Patients’ Group,
NHS Wyre Forest CCG Membership Scheme
The above articles and other items concerning hearing loss can be found here:
Kathleen can be followed on:
Twitter @kathleenlhill
Minor updates 05.06.2017
Document 4
April 11th 2017
I have not written this document. The original can be found here:
Evidence
“What does big data tell us about hearing aid use in adults with mild hearing loss?”
“Evidence suggests HCPs shouldn't hesitate in fitting hearing aids to motivated patients with mild hearing loss.”
My highlights:
“There is some evidence that hearing care professionals (HCPs) hesitate in fitting hearing aids to patients with a mild hearing loss. For example, the large-scale Marketrak VIII study conducted with US individuals with hearing loss found that 43% of respondents with a mild hearing loss reported that their audiologists had taken a ‘wait and retest’ approach to providing hearing aids (Kochkin, 2012). For those who had visited a hearing instrument specialist, the percentage was similar, at 35%.
This hesitance could be due to a number of factors. The individuals with mild hearing loss may not have indicated a perceived need for an intervention such as a hearing aid, despite seeing a HCP. Alternatively, the HCPs may show reluctance in providing hearing aids due to a perceived lack of benefit from hearing aids for a mild degree of hearing loss.
Our recent study explored the question that when individuals see a HCP and are fitted with hearing aids, do those with a mild hearing loss use hearing aids less or differently than individuals with a moderate degree of loss. We used an international database of 16,766 fittings from 159 clinics in 4 countries and extracted total of 8489 bilateral fittings which contained data on hearing loss and hearing aid use. The hearing aid use values were extracted from the hearing aids’ data logging feature, and hence were an objective measure of use.
The individuals in the database were then divided into groups based on their average hearing loss at 500, 1000, 2000 and 4000 Hz, using both the British Society of Audiology (BSA) and American Speech-Language-Hearing Association (ASHA) descriptors of degrees of hearing loss. Both define mild hearing loss to be an average loss between 25 and 40 dB HL. The BSA describes a moderate hearing loss to be between 41 and 70 dB HL while ASHA recognises a moderate degree to be between 41 and 55 dB HL and a moderately-severe degree of hearing loss to be between 56 and 70 dB HL.
In general, the results showed that hearing aid use was 8.5 hours per day for those with a mild or moderate degree of hearing loss, and 9.0 hours per day for those with a moderately severe hearing loss. There were some differences in use of the left hearing aid (none for the right) but these were minor and would not be deemed clinically relevant.
The pattern of hearing aid use also did not differ between the groups, with 8 to 12 hours of hearing aid use per day being the most common for all hearing loss groups. Similarly the use of hearing aids in different listening situations (quiet versus in noise) also did not vary amongst the groups.
In essence the study showed when individuals attend a HCP and are provided a hearing aid, those with mild hearing loss can be expected to use those hearing aids as much as individuals with moderate degrees of hearing loss. Therefore there is little evidence from this study that clinicians should hesitate in recommending hearing aids to motivated individuals who visit their clinics.
If you would like further information about this study, it is available in the ‘fast track articles’ section of the Journal of the American Academy of Audiology: Timmer BHB, Hickson L, Launer S. (2016) Hearing aid use and mild hearing impairment: Learnings from big data. J Am Acad Audiol.”
“Reference: Kochkin S. 2012. MarkeTrak VIII: The key influencing factors in hearing aid purchase intent. Hear. Rev., 19, 12-25.”
Sent to CCGs who are considering cutting hearing aid provision on NHS by
Kathleen Hill
Member of Wyre Forest Patient Participation Groups (PPGs)
Member of NHS Wyre Forest CCG Membership Scheme
Twitter @kathleenlhill
Document 5
A copy of the Action on Hearing Loss leaflet
'How's Your Hearing?'
https://www.actiononhearingloss.org.uk/~/media/Files/Leaflets/2017/How%20is%20Your%20Hearing_2017.ashx
Open Covering Letters I have written to specific members of Enfield CCG
16th June 2017
Dr Mo Abedi Clinical Chair
Enfield CCG
Holbrook House
116 Cockfosters Road
Barnet
EN4 0DR
Dear Dr Abedi
Proposal to limit provision of hearing aids on NHS
I am writing this open letter to you because:
You are the clinical chair of Enfield CCG and have professed that you are “passionate about improving health services and reducing health inequalities in Enfield.”
I am a hearing aid wearer and volunteer national campaigner with Action on Hearing Loss.
I am including documents that I hope may highlight the difficulties people with even so called ‘mild’ hearing loss will face if your CCG restricts hearing aid provision.
In my experience many clinical people are surprised when they read my document ‘The Importance of Hearing Aids - Getting the Message Across to Clinical Commissioning Groups’.
I have perceived a need for raising awareness of what it is actually like to have hearing loss. It is a hidden disability that is much misunderstood.
Please read the enclosed documents before presiding over a final decision about hearing aid services. If you deny hearing aids to those who seek help many people will be seriously disadvantaged.
Yours sincerely,
Kathleen Hill
16th June 2017
Dr Janet High
Enfield CCG
Holbrook House
116 Cockfosters Road
Barnet
EN4 0DR
Dear Dr High
Proposal to limit provision of hearing aids on NHS
I am writing this open letter to you because:
You are a member of Enfield CCG Governing Body and are “clinical lead for integrated care for older people (including dementia)”.
I am a hearing aid wearer and volunteer national campaigner with Action on Hearing Loss.
I am including documents that I hope may highlight the difficulties people with even so called ‘mild’ hearing loss will face if your CCG restricts hearing aid provision.
In my experience many clinical people are surprised when they read my document ‘The Importance of Hearing Aids - Getting the Message Across to Clinical Commissioning Groups’.
I have perceived a need for raising awareness of what it is actually like to have hearing loss. It is a hidden disability that is much misunderstood. There is a link between hearing loss and development of dementia.
Please read the enclosed documents before a final decision about hearing aid services is made. If hearing aids are denied to those who seek help many people will be seriously disadvantaged.
Yours sincerely,
Kathleen Hill
Published here: https://bliss2hear.blogspot.co.uk/2017/06/hearing-aids-under-threat-documents-for.html
16th June 2017
Deborah Fowler
Enfield CCG
Holbrook House
116 Cockfosters Road
Barnet
EN4 0DR
Dear Ms Fowler
Proposal to limit provision of hearing aids on NHS
I am writing this open letter to you because:
You are a member of Enfield CCG Governing Body, Chair of Healthwatch Enfield, member of the governing body of Healthwatch England and have previously supported older people.
I am a hearing aid wearer and volunteer national campaigner with Action on Hearing Loss.
I am including documents that I hope may highlight the difficulties people with even so called ‘mild’ hearing loss will face if your CCG restricts hearing aid provision.
In my experience many people are surprised when they read my document ‘The Importance of Hearing Aids - Getting the Message Across to Clinical Commissioning Groups’.
I have perceived a need for raising awareness of what it is actually like to have hearing loss. It is a hidden disability that is much misunderstood. There is a link between hearing loss and development of dementia.
Please read the enclosed documents before a final decision about hearing aid services is made. If hearing aids are denied to those who seek help many people will be seriously disadvantaged.
Yours sincerely,
Kathleen Hill
Published here: https://bliss2hear.blogspot.co.uk/2017/06/hearing-aids-under-threat-documents-for.html
16th June 2017
Litsa Worrall
Enfield CCG
Holbrook House
116 Cockfosters Road
Barnet
EN4 0DR
Dear Ms Worrall
Proposal to limit provision of hearing aids on NHS
I am writing this open letter to you because:
You are the PPG representative on Enfield CCG Governing Body.
I am a hearing aid wearer and volunteer national campaigner with Action on Hearing Loss.
I am including documents that I hope may highlight the difficulties people with even so called ‘mild’ hearing loss will face if your CCG restricts hearing aid provision.
In my experience many people are surprised when they read my document ‘The Importance of Hearing Aids - Getting the Message Across to Clinical Commissioning Groups’.
I have perceived a need for raising awareness of what it is actually like to have hearing loss. It is a hidden disability that is much misunderstood.
Please read the enclosed documents before a final decision about hearing aid services is made. If hearing aids are denied to those who seek help many people will be seriously disadvantaged.
Yours sincerely,
Kathleen Hill
Published here: https://bliss2hear.blogspot.co.uk/2017/06/hearing-aids-under-threat-documents-for.html
