Tuesday 28 April 2015

Hearing Aids Under Threat 1 - Letter to Dr Mark Shapley sent via email 8th December 2014 No acknowledgement!

4th December 2014

Dr Mark Shapley
Clinical Chair
North Staffordshire Clinical Commissioning Group
Morston House
The Midway
Newcastle under Lyme
Staffordshire        
ST5 1QG

Dear Dr Shapley,

Letter sent to Dr Shapley and copied to those on list at foot of letter in Dec 2014
Now being resent as an open letter.
North Staffordshire Clinical Commissioning Group’s proposal to consider withdrawing provision of NHS funded hearing aids for adults with mild to moderate hearing loss

Thank you for taking the trouble to talk with me during the comfort break at N Staffs CCG Board Meeting in public on 5th November 2014.  It was very much appreciated.  Although not a Staffordshire resident I have many family members living in Staffordshire who are likely to be affected by decisions your CCG makes.  Also, as a member of several patients’ groups, I am most concerned that this is something of a test case being closely watched by other CCGs in the country.  Thousands of vulnerable people are at risk of being seriously socially disadvantaged.  Please take a few minutes to read this letter and supporting documents.

I feel I need to clarify a few points that were raised during our chat, as well as making a few additional pertinent ones:

1.     You said that a technician had checked the loop, system and that it was working. 
a.     I said it was not working with my hearing aids or anyone else's in the room. 
                                               i.     My hearing aids do work with other loop systems. 
                                              ii.     As it is government policy for disabled people to have access in public buildings I suggest that properly working hearing aid loops should be part of this policy when meetings are held in public.  I respectfully suggest that it would be more helpful if a hearing aid wearer could test the system before meetings in public begin rather than a technician 40 mins after the start.
                                             iii.     I would question whether or not one stationary microphone placed high amongst the board was adequate for its intended purpose.

2.     You suggested that my hearing aids were not doing their job as I was unable to hear some members of the board despite positioning myself in the middle of the front row.
a.     This suggests a basic misunderstanding of hearing aids. 
                                               i.     They are valuable aids. They do not restore perfect hearing.
                                              ii.     Without my hearing aids there would have been no point in me attending your - or any other - meeting.  I would have been unable to make out much of what you were saying face to face because of the background noise in the room.
b.     There were non-hearing aid wearers who were unable to hear some board members.  My husband, in the back row, watched approximately 10 - 12 people (hearing aid and non-hearing aid wearers) leave the meeting because they could not hear what was being said.  I suggest that reasons for this may have included:
                                               i.     poor acoustics in the room,
                                              ii.     indistinct speech of some speakers,
                                             iii.     poor positioning of speakers in relation to the public - although I accept this was very largely down to the geography of the room.
1.     One of your board members (Naomi Chambers) asked a member at the very back of the room to speak up for her benefit.

3.     You said information received from Action on Hearing Loss suggested that those who derive most benefit from hearing aids are those with severe hearing loss.
a.     Louise Pritchard, Executive Director of Services at Action on Hearing Loss clarified - in your hearing - that it is people who suffer from mild to moderate hearing loss who derive most benefit from hearing aids.
                                               i.     This fact is reinforced on many reputable websites concerning hearing loss.
                                              ii.     In addition the CCG has received at LEAST three official documents confirming this fact.  This forces me to consider that the CCG is ignoring salient points in important documents submitted to them as part of the consultation process.

4.     You said 30% of hearing aid owners do not wear their hearing aids and asked me if it was right to be spending NHS funds in this way.
a.     I asked if this was a valid reason for denying hearing aids to the 70% of us who do wear them. (Mine go in when I wake in the morning and come out when I go to bed at night.) 
b.     Using this as a criterion begs the question, "Are you going to deny all patients medication because some fail to take it?" 
c.     Would it not be better to address the reasons why 30% are unhappy with their hearing aids rather than denying them to the overwhelming majority whose lives are transformed by them?

5.     You asked why 30% of owners did not wear their hearing aids.
a.     No-one wants to wear hearing aids.  It takes time to get used to foreign bodies in your ears. 
b.     Possible reasons for people not persevering may include:
                                               i.     Waiting too long to seek help for hearing loss. Someone who has had substantial hearing loss for many years may find the world too noisy when hearing aids are first fitted.  (I have a friend who wears his only when watching television for this reason.)
                                              ii.     Poor back up service in some areas where people are unaware that tweaking of aids and moulds is possible if things are not right at the start. (I have persuaded many people to persevere to get things right.) 
                                             iii.     Waiting times for appointments are often long. I waited three weeks for an appointment to have a mould that was making my ear bleed seen to.  Fortunately, I had an old mould to use in the meantime.  New wearers would not have had this option and may have become discouraged by uncomfortable, ill fitting moulds.
                                             iv.     Hearing loss saps people’s confidence which in turn makes them less likely to ‘make a fuss’.

6.     I pointed out to you that the cause of anyone's hearing loss is irrelevant. 
a.     Hearing loss prevents people from carrying out normal everyday activities that require verbal communication and can only be addressed by the wearing of hearing aids. 
                                               i.     I am aware that there are other devices for use in specific circumstances but nothing replaces hearing aids that are easily portable behind the ear and of use in the vast majority of situations. 
1.     I and many others would be social outcasts without them.
b.     You said the cause of hearing loss was not the issue. 
                                               i.     I said you had made it the issue by targeting people with adult onset age/noise related hearing loss. 
1.     NB It is against the law to discriminate on the grounds of age.

7.     I raised the subject of the scale you propose to use when deciding the cut off point criterion for supplying hearing aids. The decibel level at which I hear different frequencies tested varies from 10 to 70.
a.     You said that the 70 meant I had severe hearing loss and indeed I do have severe loss in 4,000Hz frequency.
b.     However, if the method of giving a score by averaging the decibel level across all frequencies tested is used one of my ears scores 47 and 45 (originally quoted as 49 and 44 in error.)
                                               i.     An average score distorts the the true impact of age/noise related hearing loss.
1.     Low frequencies (250HZ to 500Hz are frequently unaffected so should they be included?)
2.     Loss in higher frequencies (1000Hz to 8,000Hz) greatly affects clarity of speech.
                                              ii.     Where does this leave people like me?  Without my hearing aids:
1.     I have great difficulty hearing some sounds including: p fs th h g k ch sh. 
2.     My brain has to work very quickly to try and insert these sounds into normal speech by using the context in which they are spoken. This is exhausting, frequently inaccurate and often leads to misunderstanding. 
                                             iii.     My hearing aids enable me to hear those sounds and experience a similar level of verbal communication as those without hearing loss.
                                             iv.     Please see supporting documents 1, 2, 3, 4, 5 & 6 for further clarification of hearing loss and its effects.

8.     You asked me to name conditions for which NHS funding could be reduced in order to continue the provision of hearing aids. 
a.     I suggested fighting for more funding if the present funding is inadequate.  You said this was not possible.
b.     I do not approve of anyone with clinical need being denied treatment.  However, there are ailments where patients do have some choice over how they manage their condition.
c.     People with age/noise related hearing loss can do nothing to restore their hearing.  The only viable solution to enable them to communicate verbally as others do is to wear hearing aids.

9.     I asked what further steps you thought I should take if the campaign to preserve hearing aid provision should fail.  You replied that I should contact my MP.

10.  I know what it is like to struggle without hearing aids.  (Please see unedited supporting document 7)
a.     Making sense of what people say is a constant, exhausting battle. 
b.     In addition to the hearing challenge we have to cope with the intolerant attitude of those who believe our hearing problem is a convenient excuse for our 'failure' to pay attention.
c.      I have found that wearing hearing aids encourages a more tolerant attitude.
d.     They are visual clues that help others understand we have a medical condition that needs to be addressed - rather like a plaster cast on a broken leg.

11.  Invisible hearing loss can lead to isolation and invisible depression that can lead to invisible dementia.
a.     Informed medical opinion states that parts of the brain associated with hearing atrophy when not functioning fully.
b.     If someone does not hear and understand what is spoken they cannot store the memory of what has been said and can therefore not recall that information.

12.  I am seriously concerned that members of the board - despite their medical background - seem to lack a basic understanding of the term hearing loss. 
a.     To conduct further research before setting criteria for the provision of hearing aids seems a complete waste of public money to me.
                                               i.     What criteria do you need?  If a person cannot hear well enough to participate in verbal communication they need hearing aids. 
                                              ii.     Please see supporting documents 1, 2, 3, 4, & 5 for further clarification of hearing loss and its effects
                                             iii.     Rather than manipulating figures and formulating eligibility criteria I suggest it might be more helpful to look at samples of hard evidence of how hearing loss affects actual people.  Hence the attachment of  documents that I feel argue the case for hearing aid provision more relevantly than faceless numbers.
                                             iv.     Please see supporting documents, 3, 6 & 7 for clarification on how hearing loss affects me personally.

13.  In addition I implore you to read the excellent appeal document that I understand Action on Hearing Loss sent to you with their formal response in July. It includes anecdotal and pictorial evidence from real people whose lives have been transformed by wearing NHS hearing aids.
a.     These, I feel, are likely to help make treatment more patient centred as Dr Julie Oxtoby aims to do. 
b.     The appeal document can be downloaded here: http://www.actiononhearingloss.org.uk/get-involved/campaign/hearing-aid-cuts.aspx
c.     Hearing aid provision should be made on clinical need determined by an audiology professional not a set of criteria devised by people who have little or no understanding of the problems patients contend with on a daily basis.

14.  I know that savings have to be made to enable the board to stay within its budget but I would argue that it is grossly unfair to penalise people who have no control over their medical condition whilst continuing to fund treatment for conditions over which patients do have some control.
a.     It takes many people years to finally admit they have a hearing problem. They tend to seek help out of desperation because their quality of life has deteriorated to the point where they have to accept that they need help.
b.     To deny such people help is a cruel twist that will cause many to become reclusive. I decided I had a choice: hearing aids or social withdrawal. Will I have that choice in future or be condemned to social exclusion?

15.  I appreciate that N Staffs CCG is being expected to take decisions based on a cost effective strategy imposed from those on high.  I am, therefore, copying this letter and accompanying documents to various people and organisations who I feel have a relevance to this problem. 

16.  We should, however, be in no doubt that the NHS ethos is such that treatment should be provided on clinical need.  Every morning when I put in my hearing aids I feel gratitude to the NHS for the provision of them but angry that N Staffs CCG is considering denying thousands of patients these lifelines.

Thank you for reading this letter.  I await the board’s decision with great anxiety and trepidation.

Yours sincerely,

Kathleen Hill

Copies to: 
      Jeremy Hunt MP Health Secretary,
      Sue Hill NHS England
      Karen Bradley MP Staffordshire Moorlands,
      Paul Farrelly MP Newcastle under Lyme,
      Dr Julie Oxtoby - Clinical Accountable Officer (Her goal is to ensure the provision of the best possible medical care through strengthening and developing primary care whilst maintaining a patient-centred focus.) 
      Dr Paul Unyolo - Clinical Director (As a GP he has an interest in the well being of people, hence the importance of taking care of everyone’s Mental well being.)
      Naomi Chambers – Board Member for PPI & Vice Chair of the Board.
      Action on Hearing Loss

      British Society for Audiology (BSA)

Saturday 21 March 2015

Hearing Aids Under Threat 2 - Letter to Dr Mark Shapley sent by email 21st March 2015. No acknowledgement!

Open Letter to
Dr Mark Shapley
Clinical Chair
North Staffordshire Clinical Commissioning Group
Morston House
The Midway
Newcastle under Lyme
Staffordshire
ST5 1QG

Dear Dr Shapley,

Open Letter to the Clinical Chair regarding
North Staffordshire Clinical Commissioning Group’s decision to withdraw provision of NHS funded hearing aids for adults with mild to moderate hearing loss

Following my attendance at N Staffs CCG Board Meeting in Public on 5th Nov 2014 I wrote to you to clarify certain points that had arisen during our chat in the comfort break.  I sent that letter via email to NHS North Staffs CCG nsccg@northstaffs.nhs.uk  It was not returned as undeliverable so I must assume that it was delivered.  I have received neither acknowledgement nor reply.  Consequently, I now intend to put that letter and this one into the public domain as open letters. (Please find original letter and docs attached to this letter for your convenience.)
I decided against spending four hours travelling to and from the March meeting where just ten minutes was to be allotted to the decision to deny people such as myself the ability to fully participate in life.  However, I did read the documents presented at that meeting in full.  I submit the following feedback:

1.     Page 40:  Strategic goals: How will denial of hearing aids achieve:
a.     Reduction in inequality?
b.     Improved management of those at increased risk?
c.   An improvement in early detection and enhance the quality of life for those with LTCs? (Age/noise related hearing loss cannot be reversed.)
d.     The right care for people in the right place?

2.     Page 40:  How has the feedback the CCG received through its engagement exercise last year been reflected in these plans? 
a.     Why has so much clear evidence that people who have hearing loss should address it sooner rather than later been ignored?
b.   I was one of the 6,500 people who signed AOHL’s petition against hearing aid cuts in N Staffs.  I read both their 28 page official response to you and the appeal document they compiled using anecdotes from real people about how hearing aids had transformed their lives.  To dismiss these as not significant when making such a crucial decision seems appallingly arrogant in the extreme.  In my opinion N Staffs CCG is treating patients with hearing loss - for whom it holds the medical care purse strings - with contempt. 
c.   I wonder if any of the members of the CCG have experience of hearing loss.  John Barrowman, the singer and actor, spent a day last year with plugs fitted into his ears so that he could experience what it was like to live with hearing loss.  He said he was exhausted by lunchtime.  Perhaps a similar experience could be afforded to members of the CCG.  Might that have significant influence? 

3.     Page 41:  Risks relating to the proposals in this paper – your ONLY stated concern is Negative Publicity.  This is a deplorable insult to all those patients to whom you will deny clinical help with hearing loss.  I am incensed by the apparent insensitivity of Dr John Harvey and Gina Gill, authors of this report.  I certainly would regard the loss of my hearing aids as presenting several risks to my quality of life and personal safety.  Negative publicity would not be one of them.

4.    Page 41:  When will the CCG make the Equality Impact Assessment that it has said it has conducted public?  Were any hearing impaired people involved in that assessment?  If not, how can you possible assess the impact that denying such people the chance to participate fully in life will have?

5.     Page 44:  I see the CCG is still targeting people with adult onset hearing loss due to ageing or noise exposure.  You told me on 5th November that the cause of hearing loss was not the issue.  I repeat, “You have made it the issue.”  If someone has hearing loss they need help regardless of the cause, or their age. 

6.     Page 44:  The CCG has based its classification of hearing loss on the average of pure-tone hearing threshold levels of just five frequencies: 250, 500, 1,000, 2,000 and 4,000.  It is well known that age/noise related hearing loss affects the higher frequencies, yet N Staffs CCG has included two lower frequencies and omitted two higher frequencies from its classification scoring system.
a.     Using N Staffs formula for classification, my audiogram readings would score my ears as having 36dB and 38dB loss whereas my true audiogram readings (including all frequency thresholds recorded) give an average score of 45dB and 47dB.  My low frequency hearing is normal but at 4,000Hz is 70dB.  At 3,000Hz and 6,000Hz (conveniently omitted from your classification formula) my thresholds are 60dB and 65dB.
                                               i.     N Staffs CCG - using their formula - would deny me hearing aids.
b.     Is the omission of two crucial high frequency readings an oversight or a devious attempt to save more money by categorising many people who have moderate high frequency hearing loss as having only mild hearing loss?
                                               i.     I would like clarification on this, please, as with the present figures many people who should be given a chance to score more than 24/40 on your HHIE-S will be denied it because of questionable classification.  For the record I score 40/40 on your Hearing Handicap Inventory for the Elderly.  (Another insult and example of blatant age discrimination!)
                                              ii.     AOHL tells me that the HHIE-S is a research tool, not a clinical assessment tool.  However, should you insist upon using it then I feel that anyone who seeks help with a hearing problem should have the opportunity to answer these questions, not only those who score 41-55dB on your questionable classification scale.
                                             iii.     I am asked to press a button when I hear a beep during my hearing tests.  We do not converse in beeps.  We have to make sense of speech.  An audiogram is a guide but my audiologists tell me that everyone is different and, although they can explain why I can hear some speech sounds and not others, they cannot KNOW what I am actually hearing during conversation. 

7.     Page 47:  Patients scoring 40dB or lower are to be referred back to their GPs.  Why?  There is much misunderstanding of hearing loss - even in the medical profession - and as a member of a PPG I find it is frequently necessary to raise awareness of the impact that it has on sufferers.  Good  practice has to be constantly encouraged and provision of loop systems, where appropriate, need to be requested so that people who are hard of hearing feel less disadvantaged.
a.     How does the CCG propose to treat people who are referred back to their GPs and who cannot afford private hearing aids?
b.     Will people who do not meet the CCG’s new criteria for hearing aid provision but who currently rely on NHS hearing aids continue to receive aftercare and have these replaced when necessary or will they then be expected to manage without?  If the latter, how will the CCG suggest they are supported in this management?

Hearing Loss →Isolation →Depression →Dementia →Need for Full Time Care

is a pathway the CCG might like to consider before implementing its decision.  Please be aware that isolation can mean withdrawal or exclusion from situations that include meeting with others or an inability to join in with conversation when in company.  Both of these are distressing but the second is particularly so.  To sit in company but to be excluded from conversation is a cruel and depressing twist of fate placing the affected person at the mercy of those who lose patience at being expected to constantly repeat what they have said before finally giving up and moving on to engage with someone lucky enough to enjoy good hearing.

Remember!  That which has not been heard and understood cannot be stored in the memory and therefore cannot be retrieved from the memory at a later time.  Could this be why people suffering from dementia remember old memories but not what should be newer ones?

We are constantly being told that difficult decisions have to be made.  Sadly, it would seem that those who make the decisions are rarely affected by them.  To condemn people (many of whom will be in their twilight years) to possible decades of vastly reduced quality of life, without apparent full consideration of evidence from the people who will be most affected by such decisions is, I feel, truly reprehensible.  I am sure I am not alone in feeling decidedly outraged by the stance N Staffs CCG is taking.

Yours in dismay,
Kathleen Hill

The Importance of Hearing Aids - Original

The Importance of Hearing Aids

Why hearing aids are important to me explained in a post I wrote for Action on Hearing Loss:

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
Action on Hearing Loss (Formerly the RNID) Volunteer