WELSH KIDNEY PATIENTS’ ASSOCIATION
CYMDEITHAS CLEIFION ARENNAU CYMRU
Registered Charity No. 1050907
Website : www.wkpa.org.uk
Transplant Patient Survey 2013Renal Transplantation Provision in
Wales
ANALYSIS OF RESPONSES
November 2013
1
Introduction & Background
The WKPA aims to support and represent renal patients across Wales. Committee
members have the opportunity to be involved in discussion and consultation with
Health Professionals and Administrators at various meetings and workshops (such
as the WRCN) to give the patients’ perspective on current issues affecting renal
services in Wales. Surveys and questionnaires play an important role in
ascertaining patients’ experiences and views and allow us to better represent their
perspectives.
Since the previous Patients’ Transplant survey was conducted a number of
developments and initiatives in renal transplantation services have/are being
implemented. In particular:
 New transplant facilities at UHW
 The ‘Soft Opt Out, system for Organ Donation in Wales
 Plans to introduce an ‘All Wales’ major change regarding prescribing and
dispensing anti- rejection/immunosuppressant drugs
Thus, the aim of this survey is to ascertain our members’ experiences and
comments on recent and current issues relating to Transplant Services across
Wales in order that the WKPA is better informed to fully represent their views.
A full copy of survey can be viewed at the end of this analysis
Note: The survey was enclosed with the Spring edition of KMW which was posted
to individual patients. The insensitivity of subjecting dialysis patients for whom a
transplant is not possible, was discussed at Committee level and thus, in order to
avoid unnecessary distress it was decided not to circulate the survey to hospital
Renal Units.
The following responses were received:Number received via mail
Number received via web site
Total responses
91 (63%)
23 (20%)
114
Acknowledgements:
The questionnaire was devised and approved by the WKPA Management
Committee who wish to thank the following for their input:
Bob Wood and staff of Chas Hunt Printers
Gloria Owens and Jan Williams
Welsh Kidney Patients Association
Committee Members/Trustees
2
SUMMARY OF RESPONSES & PRESENTATION OF DATA
Part 1- Your Circumstances
Q.1 Please state age and gender
Gender
Male
Female
Total
60
54
114
%
53
47
100
Age
0-30 years
31-50 years
51-70 years
71-80 years
Over 80 years
Total
Male
1
7
35
16
1
60
Female
2
11
26
14
1
54
%
2
16
54
26
.8
98.8
Q.2. Which category of renal patient are you?
Category
Pre-dialysis
PD
Unit Haemodialysis
Home Haemodialysis
Transplant
Total
5
3
1
105
114
%
4
3
.8
92
99.8
**Note: Two patients indicated that they were either pre-dialysis or unit HD patients
yet subsequently gave positive responses to Q5-11. These may have been
referring to previous transplant operations that had failed.
Q.3 If awaiting an assessment and/or transplant, how long have you been waiting?
Type of appointment
For an Assessment appointment
3
%
37
On waiting list to receive a transplant
Total
5
8
62
99
Waiting time
Assessment
Waiting list
2 years
1
1
< 1 year
1 year
1(8months)
1
3 years
2
1
unspecified
1
3
Q.4 If a transplant recipient, how long:Did you wait for a transplant?
0-4 years
5-10 years
11-20 years
21 years and over
Did not indicate a time
Total
How long have you had your transplant?
0-4 years
5-10 years
11-20 years
21 years and over
Did not indicate a time
Total
65
10
3
%
63
9
3
25
103
24
99
24
14
18
16
33
105
23
13
17
15
31
99
Q.5 Where did you receive your transplant?
Where did you receive your transplant?
UHW Cardiff
Transplant Unit in England
Other
Total
86
5
18
109
%
79
4
17
100
Q.6 Was your transplant organ from a cadaveric or live donor?
Type of transplant
Cadaveric donor
Live donor
Did not indicate
Total
82
24
2
108
%
76
22
1
99
Q.7 How would you rate the information supplied to you by your transplant team
before and after your operation?
Before transplant operation:
Excellent
Good
Poor
Did not indicate
Total
After transplant operation:
Excellent
Good
Poor
Did not indicate
Total
84
19
4
1
108
%
78
17
3
.9
98.8
87
17
0
4
108
80
16
0
3
99
4
Q.8 How would you rate the treatment and aftercare you received following your
operation?
Aftercare
Excellent
Good
Fair
Total
%
93
5
.9
98.9
100
6
1
107
Q. 9 How would you rate the facilities at the unit in which you received your
transplant?
Facilities
Excellent
Good
Fair
Did not indicate
Total
%
67
24
6
1
98
72
26
7
2
107
Q.10 Did you experience any complications following your transplant? If so briefly
give details. (See Appendix A)
Complications
Yes
No
N/A
Total
%
47
46
7
100
54
52
8
114
Q.11 Where do you receive your follow up visits?
Follow up visits
The unit where you received your transplant
A renal unit close to where you live
N/A
Total
** Additional Comments Questions 1- 11
81
26
7
114
%
71
23
6
100
See Appendix A
5
Part 2- The Planned change in prescribing anti rejection drugs
Q. 12 Were you aware of the change in prescribing your anti rejection drugs?
Awareness of change
Yes
No
N/A
Total
64
46
4
114
%
56
40
3
99
Q. 13 How were you made aware of the change in prescribing your anti rejection
drugs?
Source of information
Doctor at your unit
Kidney Matters Wales
Fellow Patient
Transplant/Clinical Nurse Specialist
N/A
Patient did not indicate
Total
No.
17
38
3
18
7
31
114
%
15
33
2
16
6
27
99
** Note: 46 patients answered “no” to Q11. 15 of these answered Q 13. This
is reflected in the different percentages in the two tables above.
Q. 14. Do you anticipate any practical problems with the implementation of the
proposed change to the method of prescribing your anti rejection drugs?
Concerns over medication plans
Yes
No
Don’t Know/Unsure
N/A
Not enough information to respond
Did not indicate
Total
30
56
13
6
3
6
114
** Additional Comments on Questions 12- 14
%
26
49
11
5
3
5
99
See Appendix B
6
Part 3 The Welsh Government plans to introduce a “soft opt out” system on
Organ donation by 2015
Q. 15 Do you?
Opinions on Soft Opt Out
Agree
Disagree
Don’t know
Total
96
4
14
114
%
84
3
12
99
7
Analysis of tables
Part 1 (Qs 1-11):
114 patients responded to the survey, 60 ( 53%) male and 54 ( 47%) female. Of
these, 2% were under 30, 16% were between 31 and 50, 54% were between 51
and 70 and 26% were between 71 and 80. One respondent was over 80. 105
(92%) had received transplants; the remaining 8% were on dialysis or were pre
dialysis patients.
Responses to Question 4A showed that, of the 103 responses, 63% waited up to
4 years for a transplant, 9% waited between 5 and 10 years, 3% waited between
11 and 20 years.
Responses to Question 5 showed 79% had received their transplants at UHW
Cardiff, 5% at units in England and 17% at other units ( many of the 17% had
received their transplants at Cardiff Royal Infirmary.) 76% had received a
cadaveric graft whilst 22% had received an organ from a living donor.
Overall, respondents were pleased with the information, treatment and facilities
they had experienced during the transplantation process. 78% and 80%
respectively, felt the information received before and after surgery was excellent.
17% and 16% felt it was good and only 3% found that the information before
surgery was poor. 93% of respondents rated the treatment and after care received
excellent, 5% rated it good and only 1 (0.9%) respondent rated it fair.
In respect of the facilities, 67% rated the unit excellent, 24% rated it good, whilst
only 6% rated it fair.
In respect to Question 10: “Did you receive any complications following transplant”
47% reported experiencing complications and 46% did not. The comments
included in Appendix A will show the nature of complications received.
In respect to Question 11 “Where do you receive your follow up visits?” 71% attend
the unit in which they received their transplant; 23% attend a unit close to where
they live.
Part2 (Qs 12-14):
63 (55%) of respondents were aware of the planned changes in the prescribing
and provision of immunosuppressant medication, 45 (39%) were not. It should be
noted that 9 (8%) were dialysis patients for whom this part of the survey was not
relevant. 37 (32%) had learned of the change through the WKPA magazine Kidney
Matters Wales. 19 (17%) had learned from their doctor, 18 ( 16%) from the
transplant specialist nurse and 3 (3%) from a fellow patient.
Of patients who were aware or will be affected by the change, 30 (26%) said that
they anticipated practical problems with the implementation of the change, 56
(49%) did not anticipate any problems. 13 (11%) were unsure or didn’t know, 3
(3%) did not have enough information to respond. 12 (10%) did not indicate or
stated the change was not applicable to them. See comments in Appendix B
Part 3 (Q15):
Of the 114 responses 96 (84%) agreed with the soft opt out system, 14 (12%) did
not know and 4 ( 3%) did not agree.
8
Conclusion
Of the 114 responses only 105 were from patients who have received a kidney
transplant. There are 1630 transplant patients in Wales (ref: WRCN Renal
Transplant Prevalent Population –December 2012). Whilst the responses are just
6% of this total, the results have yielded some significant information which will
assist the WKPA in representing patients’ views.
Disappointingly only 8 responses were received to Question 3 concerning the
length of time patients are waiting for an appointment to be assessed for access to
the transplant waiting list. As a result, it is not possible to draw any conclusions
whether or not there is equity of access to the list.
It is evident that the majority of transplant patients had received their grafts at UHW
Cardiff and were satisfied with the information, treatment and facilities they had
experienced. Comments included in Appendix A would indicate that it is those
patients with long term grafts who have give lower rating to the facilities. In
comparison, the facilities at the new unit at UHW were highly rated. With regard to
post transplant complications, half of the respondents had experienced
complications following transplantation. Comments in Appendix A show the nature
of the complications. The results show that the majority of patients prefer to have
their follow up visits at the unit where transplant surgery had been performed.
Only 55% of respondents were aware of the change in the prescribing and
dispensing of the anti rejection drugs being implemented throughout Wales.
Although 45 patients indicated they were unaware of these changes, 15 also
indicated that they had been made aware either by the unit or Kidney Matters
Wales. It is unsure what the reason for this discrepancy may be, although it is
possible that individual interpretation of the question could have resulted in some
patients reported being unaware prior to actually receiving the survey.
Comments in Appendix B illustrate that patients have anxiety over the proposals,
not only in the implementation of the change but in how the change in drugs will
affect their well being in and their graft. Concerns over new and adverse side
effects were also expressed.
It is pleasing that responses to Part 3 on the Welsh Government’s plans to
introduce the “soft” opt out system on organ donation reflect the views of the public
at large showing 84% in favour. The Human Transplantation Act (Wales) is now
law and WKPA representatives will be active in the two year information campaign
proposed by the Assembly. It is important that in doing so, we continue to
accurately reflect our membership’s views.
9
APPENDIX A
ADDITIONAL COMMENTS QUESTIONS 1 – 11
1. Transplant nurse and Sister Glen great.
2. There has been some difficulty in getting the dosage of medication right, It is an
on-going problem which seems to e working out successfully-albeit slowly.
3. Q8. Excellent aftercare from 2007 to present with very regular & thorough
monitoring & follow up. 2006-7 quite good, but less continuity after 6 months and
some staff inexperienced.
Q9. Standards of cleanliness in toilet &bathroom (B5) areas very poor, particularly
in consideration of the risks to transplant patients.
4. Now my kidney check up nearer home at Hummingbird Clinic, Royal
Shrewsbury hospital. With date 3rd, May by D.R. Davies.
5. I was aware that the ward I was on was not very clean, particularly the toilet and
shower facilities despite the nurses requesting cleaning. My donor was moved
between 3 wards & ended up in geriatric amputee was a concern
6. The new transplant unit at UHW is excellent. The staff seemed happier; the
facilities were much better-it is all different to the B5 renal ward.
7. I am not on yet on dialysis. Having regular check up at Cardiff (wonderful care &
treatment from everyone I’ve met)
8. Q9. Transplant on B5 showers not working. New unit excellent
9. Narrowing in artery in transplant kidney angiplasti carried out.
10. My elderly parents were informed that I had had a splenectomy, and when it
would be suitable to visit. They were informed at every stage.
11. 2nd transplant-1st transplant failed after 5 days received 2nd a year later.
12. Pre transplant care Morriston. Process of establishing my live donor transplant
appeared drawn out & long in length.
13. In 2007 the conditions in the transplant ward at UHW were very cramped. So it
is pleasing to know of a purpose built transplant ward is now in operation at UHW.
14. I like the fact that at UHW the results of blood tests at the transplant clinics are
given to you during your visit giving you a chance to discuss the results with the
doctor or nurse on the day
10
15. I had my transplant in 1995-at CRI. The unit there may have been oldfashioned, but it was independent of the rest of the hospital, and was scrupulously
clean- it had its own cleaner, who also helped with the patients’ breakfasts. There
was a nurse in charge. There were fewer renal doctors then, and fewer patients, so
we knew each other well. The atmosphere always seemed friendly and relaxed,
especially in clinic, helped by the WRVS canteen. I suppose since the move to
UHW, we have benefitted from improvements in renal medicine, but everything
seems more clinical and impersonal, even though some of the staff are the same
and, on a more frivolous note, the chairs in the new transplant suite are extremely
hard and uncomfortable!
16 .I cannot fault the care I have received over many years at UHW. And I
appreciate that at my age. I was very fortunate that I was even considered for a
transplant and was put on the register. There are no words to describe my feelings
towards my grandson for his amazing gift. Both he and I received the best care and
have been in excellent health ever since. He was back playing football eight weeks
after surgery.
17. The treatment I have had at UHW has been 1st class for this transplant and a
previous one which failed due to CMV.
18. The transplant (12 years ago) has allowed me to live a fairly normal life-a
miracle! Many thanks.
19. Transplant No 1 rejected (No immunosuppressive drugs available at the time),
transplant No 2 rejected. So why do you want to change for what looks like extra
costs in check ups etc.
20. Initially 3x week at transplant unit, which is some distance away, reducing to
twice a week+ one at local unit, finally transferring to local renal unit within approx
4/5 weeks. Annual visits to transplant unit for several years, now dealt with by local
renal unit unless problems arise.
21. I attended the renal unit in the children’s unit in the royal infirmary and then the
children’s unit in the Heath and now I attend the adults unit at Morriston.
22. I am receiving assessment for a transplant at UHW.
23. 2 year wait due to pre live donor transplant medical tests and medical
treatment.
24. The 3 years awaiting transplant was spent on haemodialysis at Carmarthen.
25. This is my third transplant, waited while on haemodialysis a year in 1982.
Second transplant, waited four years while on capd. Received this kidney from my
eldest daughter before requiring dialysis.
26. I must give thanks to the transplant team at UHW Cardiff for their very
professional care they supply. I’m forever grateful.
11
27. I had a few set backs due to sclerederma. Had to have a further opangioplasty.
28.Q 10. Minor rejection Feb 2012.
Q 11. UHW Cardiff Sept 2011- March 2012. Renal unit Morriston hospital –
March 2012 –date.
29. I am presently suspended from the transplant list as my kidney function has
remained above 18% effective for the last 6 months.
30. Q 10. Viral infection and slight rejection but everything is ok now.
31. Since my operation, I can’t bend down to put my socks on.
32. I would like the opportunity to be considered for a transplant.
33. Q 4a - 18 months Q 4b – 1996 Q 10- rejection (slight)
34. Absolutely excellent treatment before during and after transplant by all strata of
personnel.
35. I cannot fault the care I have received over the past 23 years. Most of the
consultants who originally treated me have now retired but they have been
replaced by equally committed doctors.
36. Q 9 The medical facilities were excellent –but toilet and showers were awful.
37. Overall before and after care excellent.
38. Q 4 I waited approximately 2 months for a transplant.
39. The facilities in the old unit was very poor, the facilities in the new unit very
good. In/ Out for 6 months after opp. Went to opp theatre 4 times in all, weeping
wound infection and c’diff.
40. It is my opinion apart from my gender, age and two ticks in 2 and 3 of which
this information is already known, the other questions could be upsetting to be
asked to fill in. Should these questions be relevant to patients like me who are
waiting to be called?
41. Q 10 New Kidney slow to start. Bad reaction to operation. In hospital 17 days.
Small rejection problem after 4 months.
42. Q 10 Adhesions (2nd operation), Infection (intravenous antibiotics).
43. Having been a renal patient since 1985 I have seen many changes but the one
thing that have remained constant is the professionalism of the staff from CRI
through to UHW.
12
44. No information provided on cancer risk/ in particular to sensitivity to sun- until
10 years after transplant (was it known?)
45. Graft slow to start working and some slight fluid retention requiring minor
keyhole surgery.
46. Infection in my Hickman line. When the Hickman line was removed I aspirated
in theatre and ended up on life support.
47. No problems with the kidney transplant, but due to slightly high parathyroid
hormone, calcium level too high, and have had knee pain ( debilitating when
walking). This has improved since taking cinacalcet.
48. They thought I was rejecting the kidney so I had to have a biopsy but
everything was ok.
49. Haematoma
50. Rejection
Total number of comments: 50
Comment 19 also appropriate for Questions 12-14
13
APPENDIX B
ADDITIONAL COMMENTS Q 12
1. As long as the drugs are given without any problems, it should be fine-it takes 3
days to get tablets at present and if short you have to get them at the hospital
anyway
2.I don’t know what the changes are
3. As I am unaware of these proposals, and having been unable to find out any
details, I have no idea whether they will affect me.
4. I am not sure about the way that the prescribing of my medication is going to
change, and how will it affect me?
5. Only that my medication would be provided by the hospital and GP. Would
prefer coordinated prescriptions so only picking up medication once.
6. No comments at this point.
7. If this system works as effectively and efficiently as the EPO from Morriston
hospital then I cannot envisage there being any problems. If by this change money
is being saved which then released for other purposes within the system, all well
and good.
8. Yes, if I have to collect them from UHW instead of currently from my local
pharmacy via my doctor.
9. As I don’t know what the proposed change to the method is I can’t answer the
question.
10. so long as they work
11. Question 14 answer don’t know.
12. Don’t know.
13 .Depends if it’s mandatory so unknown.
14. If I have to come to the hospital for my drugs on a monthly basis this would
cause a problem unless enough drugs were given for the time between
appointments
15. I hope the transition will be smooth. What happens if new drugs are
developed? Are the G.P.’s aware of the changes?
14
16. Cannot answer Q 13 and 14 as have not had any information regarding
changes in drug prescribing.
17. I am unable to answer the above question fully as I have not received any
information on the changes from primary care to secondary care management or
the changes in prescribing my drugs and how the above will affect me personally.
18. In 2012 there were notices in the Renal Dept warning patients to make sure
that they were taking the same drugs as before e.g. Prograf (not other makes).
What’s changed? As a transplant recipient of 13 years I don’t want to rock the boat
and start trying different makes of drugs.It’s all about money as usual. P.S. If this
money saving experiment goes wrong I won’t be given another kidney. I am over
the age limit- If they’re determined to go ahead then they should make an
exception for those over 75. ( I think 75 is the cut off point for transplants)
19. Need further information on the above, please.
20. Not had enough information and discussion t give an answer
21. Only in fitting in extra clinic visits, as I work
22.I have trust in the transplant staff at the transplant clinic in UHW in adjusting
and changing drugs as required.
23. Just a little nervous. I consider the option for generic drugs and its savings to
be correct unless Wales NHS can agree the similar amount of cost savings with
the original supplier of the drug whose licence is about to expire.
24. Not Sure. For long term transplant patients-why not leave them on the
medication they are currently taking. (If it’s not broke, why fix it!!) Do patients have
a choice?
25. Not too sure about all the details with changing anti rejection tablets.
26.At the present time my anti rejection drugs are ordered together with my other
medication by a phone call and pick up at pharmacy at a time which is convenient
i.e. after work hours/Saturday mornings. How will my medication be ordered and
attained.
27. Not taking tacrolimus since 6 months after transplant. Now taking sirolimus.
28. Have no idea what the proposal is so unable to comment.
29. As my existing medication is subject to frequent manipulations, I do not want to
start changing my basic anti rejection drugs before a successful outcome with the
current problems.
30. This is confusing and not clear how medication will be managed. Needs
clarification to the majority of patients.
15
31.Q.13. Information also through WRCN meetings and from pharmacist’s
presentation at the WKPA AGM 2012. Q. 14. Concerns over the implementation of
changes to generic rather than “Brand” named drugs. All immunosuppressants
cause a wide range of side effects and a phased gradual change from Brand to
Generic is essential to monitor any new adverse effects which may arise.
32.I had a stroke rt side of my body 11 yrs ago result I walk with aid of my walker,
use a trolley in the house and sleep downstairs. I have a lady in our village who
hoovers cleans and???. A lady gardener. I have beautiful spring flowers a man
cuts my lawn. I have to pay for all the help I receive. I have 1 wonderful son who
brings my groceries. I have 1 beautiful grandson who graduated with a B.S.C from
C’diff Uni and a 2nd grandson to graduate from Pontypridd this summer, he also
love rugby. A beautiful grand daughter at Llanidloes High School, my daughter in
law is a music teacher. The reason to let you know how grateful I am my transplant
in April 94.
33. N.B. I am concerned that my “brand” is being changed after having no
problems so far since my transplant. Also concerned that my GP will be prescribing
other medication perhaps without reference to transplant medication. I have
already been prescribed drugs in the past that reacted with transplant meds. Will
new regime make it more likely to happen?
34. G.P already not prescribing my anti rejection drugs so I receive them from the
hospital, all other drugs are from the G.P. So ideally have one place to get all my
medication would be easier.
35. Although I have had information about change of drugs, I have not yet changed
or been warned of an imminent change
36. Taking medications over a period of time, we know of the side effects. New
medication can make patients afraid of future side effects.
37. This may not apply to me as my anti rejection drugs are azathiaprine and
prednisolone as old transplant patient.
38. Live 100 miles away from UHW
39. I am not aware at present that there will be a change of method of prescribing
my anti rejection drugs.
40. This is going to weaken the link between patients and their G.P.
a) I envisage a situation in which some of my drugs come from the hospital, and
some from my G.P (it is a dispensing practice)
b) Acquiring drugs from the hospital will require planning and forethought-I am 33
miles from Cardiff and 3 from my G.P
c) It seems to me that the hospital pharmacy (UHW) is already overloaded. Will it
be given additional resources to cope with its extra work-load. If this is a cost
cutting exercise, the answer is probably “No”
16
A pity you didn’t ask about the Patient Transport Service. I would have a lot to say
on that subject.
41. I don’t feel sufficiently informed to answer question 14 in spite of looking up the
WCRN contribution to the WHSSC meeting of 29/01/2013 on the internet. But
currently the Health Board in which I live will not prescribe tacrolimus, which I
continue to receive from UHW. I wonder if this will be a complication.
42. I have received a letter relating to the changes, but have not discussed it with
anyone at UHW, but I feel sure that nothing will be done that will put me or my
transplant at risk.
43. As my transplant is 25 yrs old, the way I have received my anti rejection drugs
been through my doctor and chemist, they have been absolutely wonderful and I
really would prefer to keep it this way, if possible.
44. I would be v.unhappy if the care that I receive should be transferred to another
source.
45. But it is a worry due to being on the same medications for years.
46. Unsure-it will mean longer in clinic because of the need to go to pharmacy and
wait for prescription to be dispenses. I am on prednisolone enteric coated tablets. I
have heard that enteric coated pred. is no longer prescribed for new transplant
patients. I was told, at the time of my transplant, to always ensure the G.P.
prescribed enteric coated prednisolone to protect my stomach. I wish to remain on
enteric coated pred. as this has suited me well for 31 years. I have an excellent
relationship with my G.P practice and it would be better for me to continue to have
all my drugs prescribed at G.P level. As the “bulk” purchase of the generic versions
of newer drugs is economically viable—would it matter too much to keep “older”
transplant patients on the old system?
47. This has left me shocked and shaking. Having had two previous kidney
transplants reject, the thoughts and fear I am experiencing is mind blowing/ I am so
disappointed in the way this change over has been brought about. We as patients
are once again being brushed aside. Money it seems rules the roost. Just hope this
change over does not backfire. Has the amount of money been costed, taking into
account the extra visits us patients will be making and costing!!!.(No prior
knowledge)
48. I did receive a letter from the renal unit UHW to say my drugs would eventually
be changing, but nothing subsequently has been done.
Total number of comments: 48
17
Transplant Patients’ Survey 2013Renal Transplantation Provision in Wales
To help the WKPA represent your interests in the most effective manner it is important that
we are kept well informed of your experiences, views and issues in relation to the above
matter. We would therefore be grateful if you could spend time reading and completing the
following questions. Please answer or tick questions relevant to you and add any
other information in the spaces provided and/or in the comment boxes.
Part 1- Your circumstances:
Additional comments Question 1-11:
1. Please state your Gender and age:
A. Gender
B. Age
2. Which category of renal patient are
you?
A. Pre dialysis
B. PD
C. Unit Haemodialysis
D. Home Haemodialysis
E. Transplant
A. For an assessment appointment?
3. If awaiting an assessment and/or
transplant, how long have you been
waiting:
4. If you are a transplant recipient, how
long:
5. Where did you receive your
transplant?
6. Was your transplant organ from a:
7. How would you rate the information
supplied to you by your transplant team
before and after your transplant
operation?
8. How would you rate the treatment and
aftercare you received following your
operation?
9. How would you rate the facilities at the
unit in which you received your transplant
10. Did you experience any complications
following your transplant? If so briefly
give details
11. Where do you receive your follow up
visits?
B. On the waiting list to receive a
transplant?
A. Did you wait for a transplant?
B. Have you had your transplant?
A. UHW Cardiff
B. Transplant Unit in England
C. Other
A. Cadaveric donor?
B. Live donor?
Before
After
A. Excellent
A. Excellent
B. Good
B. Good
C. Poor
C. Poor
A. Excellent
B. Good
C. Fair
A. Excellent
B. Good
C. Fair
A. Yes
B. No
A. The unit where you received your
transplant
B. A renal unit close to where you live
Part 2-The planned change in prescribing anti rejection drugs:
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As previously reported in the Christmas edition of KMW, a change in the way anti-rejection
drugs for transplant patients will be prescribed is being implemented, on an all Wales
basis, by the Wales Renal Clinical Network. Please answer Q.12-14 below.
The following extract is taken from a paper presented by the WCRN to the meeting of
WHSSC held on 29th, January 2013:‘Engagement is on going with Primary Care and patients groups regarding the repatriation
of transplant recipients from primary care to secondary care management. This will be
progressed once the appropriate infrastructure is established in secondary care to enable
the safe transfer of care.” This will commence in 2013/2014.’
12. Were you aware of this change in
prescribing your anti-rejection drugs?
13. How were you made aware of the
change in prescribing your anti-rejection
drugs?
A. Yes
B. No
A. Doctor at your unit
B. Kidney Matters Wales
C. Fellow patient
D. Transplant/Clinical Nurse Specialist
14. Do you anticipate any practical
problems with the implementation of the
proposed change to the method of
prescribing your anti-rejection drugs?
A. Yes
B. No
Additional Comments on Questions 12-14:
Part 3- The Welsh Government plans to introduce a “soft” opt out system on Organ
Donation by 2015.
15. Do you?
A Agree
B. Disagree
C. Don’t Know
Completed surveys should be posted by 31st, May 2013 to: Mrs Gloria Owens,
Committee Member, 69, Harlech Crescent, Sketty, Swansea SA2 9LL
Alternatively, the survey can be completed on-line at www.wkpa.org.uk
Thank you for your co-operation.
19