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)
