Download here - OcuMel UK

Report on
Waiting Times
Contact: Kathryn Curtis, General Manager
Email: [email protected]
Registered Address: OcuMel UK, 139 Langley Road, Slough, Berkshire SL3 7DZ Phone: 01276 682190
Charity Registered in England No.: 1147506
Website: www.ocumeluk.org
A report by OcuMel UK on patient experience of waiting times in the three English
eye centres, using data taken from completed OcuMel UK patient questionnaires
OcuMel UK is a charity representing those affected by ocular melanoma. We aim to support patients and their
families by providing accurate, up-to-date information and emotional support via our website and helpline.
Vision: A world where ocular melanoma patients and their families are given the information, support and
treatment they need.
Total questionnaires received: 54
Introduction
15
12
17
3
2
1
3
Since our inception in 2011, OcuMel UK has been asking all new
patient members to fill out a questionnaire about their experiences
so far. Please see appendix for a blank copy. The questionnaires
are anonymous, although many choose to add their name for
internal use only.
London
Sheffield
Liverpool
Glasgow (not included)
Incomplete (not included)
Private (not included)
Conjunctival (not included)
Total questionnaires included in the
report: 45
There has been limited take up as OcuMel UK have not aggressively
promoted the questionnaires. This was partly due to a lack of
manpower but also uncertainty over the purpose of the
questionnaires.
Now OcuMel UK have a larger membership and bigger online reach,
we are interested in a more rigorous approach to surveying our patient members.
OcuMel UK would welcome outside agencies’ involvement in creating the questions for an annual questionnaire.
Anyone wishing to assist with this please do not hesitate to contact our general manager, Kathryn Curtis, via
[email protected].
This Report
This report is about the experience of our patient members who have been treated in one of the three English eye
centres. We have not included conjunctival melanoma patients as the questionnaire is not designed for them. We
also had one private patient fill in a questionnaire. It is relevant to note that this patient decided to “go private”
after being told she would have to wait a month to be seen in London, but other than that the questionnaire has
not been included.
The statistics represented here are of a basic nature and a small cohort, but nevertheless may point to general
patterns across the English eye centres. OcuMel UK understand that this information does not show the whole
picture surrounding waiting times, however, we hope that it will provide a starting point for discussion and a
springboard to more accurate, non-subjective statistics being produced by commissioners in the future.
The tables below assume a target of 2 weeks from suspicion of cancer (taken from the local ophthalmologist
appointment not initial optometry appointment) and a month from diagnosis (by ocular oncologist) to treatment.
SECTION ONE: From local ophthalmology centre to first eye centre appointment
In London, 47% of patients were seen within 2 weeks compared to 83% in Sheffield and 59% in Liverpool. No one in
Sheffield was seen after 4 weeks.
Time from referral to first appointment
London
Sheffield
Liverpool
Average
A
0-2 weeks
%
47
83
59
63
B
2-4 weeks
%
33
17
35
28
C
4-8 weeks
%
13
0
6
6
D
9 plus weeks
%
7
0
0
2
B-D
Outside of cancer targets
%
53
17
41
37
SECTION TWO: from first eye centre appointment to treatment
In Sheffield, 66% of patients were treated within 4 weeks compared to 73% in London and 78% in Liverpool.
Time from first appointment to treatment
London
Sheffield
Liverpool
Average
A
0-2 weeks
%
33
58
53
48
B
2-4 weeks
%
40
8
23.5
24
C
4-8 weeks
%
20
25
23.5
23
D
9 plus weeks
%
7
8
0
5
C-D
Outside of cancer
guidelines %
27
33
24
28
SECTION THREE: Observations and Patient Recommendations
Observations on Section One
Waiting times from local ophthalmology suspicion to the first appointment at the eye centre is a very important
statistic for patients. Any length of waiting to get confirmation that you have cancer is tortuous, but the target of
two weeks is reasonable and in line with other cancers.
According to the Cancer Waiting Times annual report 2012-13, 95.5% of patients urgently referred for suspected
cancer by their GP were seen by a specialist within 14 days of referral. Ocular oncology centres should be held
accountable for their waiting times in the same way that the centres included in the above report have been.
OcuMel UK is not in a position to assess whether our figures are accurate, as we do not have the date that the
relevant referrals were received by the centre or confirmation of the exact appointment date. For example, a
proportion of those seen in the 2 – 4 week window could conceivably have been seen only a little over two weeks
and be due to the referring ophthalmologist not making the referral within 24 hours.
It is important that centres understand that if they receive a referral they are required to see that patient in
person and not attempt to diagnose them over the phone. It would be highly inappropriate for physicians to
downgrade ocular melanoma patients from the standard urgent referral to a non-urgent referral by telephoning the
referring physician. It is also important that centres understand that diagnosis should be made by a consultant
appearing on the specialist register (unless exempt).
Recommendations on Section One
Patient Recommendation 1: There should be a retrospective analysis of referral dates and first appointments,
specifically those taking place from September to December in any given year. This data is no doubt held within
the centres’ own computer systems and can be very easily retrieved. The commissioners should then compare this
to the national cancer waiting time statistics and the results should be made public.
Patient Recommendation 2: Once the above is completed, if a centre stands out in the way Sheffield did in our
results, they should be asked to share their approach with the other centres to help disseminate best practice.
Patient Recommendation 3: Commissioners should ensure only appropriately qualified staff are employed within
the eye cancer service.
Patient Recommendation 4: Commissioners should ensure that appropriate systems are in place to allow patients
to be seen within two weeks, without having to resort to diagnosing from a distance. Funding levels may currently
be inadequate.
Observations on Section Two
It is disappointing to see all the centres are failing to meet the target for treatment within a month for between a
quarter and a third of patients. The Cancer Waiting Times annual report 2012-13 reported that 98.4% of patients
were treated within 31 days that year.
Some of the patients falling outside of the 31 day window, may in fact have chosen to do so themselves.
Anecdotally we can report many instances of patients being told to take a planned holiday prior to treatment.
OcuMel UK support the right of patients to do whatever is right for them personally, as long as they have been
properly informed about the nature of their disease.
OcuMel UK believes that the 31 day guideline should be adhered to, or even bettered in the case of ocular
melanoma as the cancer can spread once the mass of the tumour is more than 7mm cubed. Ocular melanoma that
has spread is currently fatal, so this should be a strong motivating factor for centres to improve their figures.
A further analysis of the questionnaires show that all of the patients from Liverpool in column C and half in column
B, had proton beam therapy. Of the other two patients in column B, one had resection of the tumour and the other
is unknown. This may point to a correlation between treatment waiting times and mode of treatment, at least in
Liverpool.
Recommendations on Section Two
Patient Recommendation 1: There should be an analysis of modes of treatment and time to treatment from each
centre, including numbers of patients accessing each treatment.
Patient Recommendation 2: Centres should ensure they fully consent patients. With-holding, or not offering basic
prognosis information, is not giving patients the option of accessing the information they need to make informed
decisions about their treatment. This is even more crucial where there is a suggestion patients may wish to delay
treatment.
Patient Recommendation 3: Commissioners should provide appropriate targets for specialised centres so they can
improve their waiting time to treatment, and commissioners should ensure centres are properly audited on a
regular basis to ensure a level of accountability.
REPORT prepared by Kathryn Curtis
20/05/14