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HHKPA Newsletter
| NEWS Section Contents |
|
| HHKPA Diary | |
| Transplant Games | |
Would
you like to
know more about
the work that we
do? Then give
Don Taylor a ring
on: 01895
445198
 |
HHKPA members can buy 'Kidney Failure Explained' (Class Publishing,
£14.99) for
£12.99 inc p&p - saving £5 on the normal mail order price.
To order call hotline 01752 202 301 or send a cheque to Class Publishing
(Priority Service), FREEPOST (PAM6219), Plymouth PL6 7ZZ.
You
must quote
the special reference number
when you place
your order (obtainable from the KPA Autumn newsletter).
|
|
||||||||||||||||||||||
Issue:
Autumn 2005 (273KB)HHKPA
Newsletter
The newsletter is issued 3/4 times a year and mailed to all KPA members.
FEBRUARY
2003 ISSUE
(excerpt)
PALS - PATIENT ADVICE AND LIAISON SERVICE
By Catherine Dale, PALS Development Manager
What
is PALS?
It is the Hammersmith Hospital Trust's new Patient Advice and Liaison
Service. PALS is an advice and information service for patients, carers,
friends and families. PALS can be contacted if you have concerns, questions
or comments about any aspect of your health care or treatment.
This new service is part of the NHS Plan and PALS are being set up in all health trusts.
How
do PALS help patients?
The PALS team will point you in the direction of the advice and information
you need. They will assist in solving problems that you raise by liaising
with other staff in the Trust and outside organisations. The team will
collect information on the issues patients bring to them, with a view
to suggesting areas in which hospital systems can be improved.
What
types of issues does PALS deal with?
PALS staff have so far dealt with queries and concerns on the following
areas: appointments, procedures, medical information, general hospital
information, staff attitude and the hospital environment.
Some
examples of where PALS have helped:
A relative of a patient was confused about the diagnosis given by the
doctors. PALS approached the sister on the ward who spoke to the patient
and ensured that the next time the relative was visiting, one of their
doctors was contacted for further information.
A patient received two different letters about the same appointment but with different times. PALS resolved the problem and fed the issue back to the staff who had sent out the letters.
A patient who had undergone tests at one of our hospitals was waiting for results to be sent to their GP. PALS contacted the appropriate units and kept them concerned informed of the progress.
How
do PALS ensure that problems highlighted to PALS do not re-occur?
Each issue that the PALS team deals with is recorded. The team regularly
analyses the issues raised and makes a note of any trends. This information
is fed back to senior members of staff who review their services and implement
changes to make them more patient-centred.
What are the aims of PALS?
- To assist patients, their families and carers who have concerns, questions or suggestions about the Trust's services.
- To liaise with staff in the Trust to resolve issues effectively.
- To provide information about other services that can be accessed to support health needs.
- To pass on comments and suggestions to enhance the development of more patient-centered services.
How
can I contact PALS?
- For
Hammersmith Hospital
If you wish to visit us in person, you can find us near the Admissions Office on the South Corridor of Hammersmith Hospital.
You can also telephone on 020 8383 3322
fax on 020 8383 3122 or
email pals@hhnt.nhs.uk - For
Charing Cross Hospital
If you wish to visit us in person, you can find us in the main entrance of Charing Cross Hospital.
You can also telephone on 020 8383 0088
fax on 020 8383 0087 or
email pals@hhnt.nhs.uk
If you have any general questions about PALS please pass them on to the newsletter editor and Catherine Dale will answer them in a future edition.
AUTUMN
2002 ISSUE
KEEPING
PATIENTS INFORMED
By Sister Kim Pryde
Hammersmith
Hospital CAPD Sister Kim Pryde and Baxter Health Care Nurse Ms Jo Luckman,
organised a Patient Information Workshop in June. It was held in the Baxter
Renal Education Centre which is located in Central Middlesex Hospital
at Park Royal.
Nine patients attended the session, some brought family members with them and the day was a great success. The nurses organised several games to help patients find out more about how to manage their treatment, stay healthy and minimise the risk of getting an infection.
Patients commented that they had enjoyed the day meeting other patients with kidney failure. They were able to share information and tips about how to manage their life now that they were on Peritoneal Dialysis. They enjoyed a buffet lunch provided by Baxter Healthcare and said they would love to come to other workshops. It was a great social event and an opportunity to make new friends and share experiences.
Because the day was so successful, Kim and Jo are hoping to provide similar days in the future and encourage more patients to attend.
If
you are interested in attending a Patient Information Workshop please
speak to one of the Senior Nurses in your Dialysis Unit.
BRITISH
TRANSPLANT GAMES
by Don Taylor
The
Hammersmith team had a successful time and lots of fun at the 2002 Silver
Jubilee British Transplant Games in Loughborough between 29th August and
1st September.
Bill Hollins, taking part in his eighteenth British Games, gained a creditable runners-up position in the 50 metres Back Stroke. He also took part in Badminton and Bowls with fun and friendship as his reward. Bill always emphasis this element of the Games.
As the Team Manager I retained the Bronze medal position I established last year in the Table Tennis competition though I was hoping for improvement.
At this years Games Eileen Quinn-Smith, who we profiled in the last issue, was again outstandingly successful. In the Track and Field programme she tried to win five titles, which was an intensive programme. She started by gaining runner-up position in the Long Jump, an event in which she had not been able to train because of an injury sustained in the World Games in Japan last year. She followed this with a sprint double in the 100 and 200 metres. She then took the High Jump title and followed this with victory in her most feared event, the 400 metres.
All this was achieved in only 150 minutes, a stint of athletics that should not be expected of any athlete.
Deservedly, she was awarded the Women's Victor Ludorum as the best female athlete of the Games. This was presented by Richard Caborn MP, the Minister for Sport, at the Gala Dinner to celebrate a successful Silver Jubilee Games. Eileen has again been selected to represent Great Britain in the World Games in France next year. At these Games she will be hoping to reach her target of 50 British and World Games medals. This will be a great achievement as it has only been seven years since she re-started her athletics career after her transplant.
As
Chair of the KPA I am particularly keen to expand the Hammersmith Team
next year. Any member with a successful transplant and even the smallest
interest in sport should contact me for details. There are many different
sports in the programme and next years event will be held at Stoke-on
Trent between 27th and 30th July 2003.
KIDNEY
FAILURE EXPLAINED
By Doctor Stein & Janet Wild RGN
Written
by two experienced medical authors, this fully updated second edition
practical handbook covers every aspect of living with kidney disease -
from diagnosis, drugs and treatment, to diet, relationships and sex. Out
now, it contains up to date, medically accurate information from experts
and cuts through the confusing medical jargon, explaining the terms in
plain English. It tackles the questions you may feel uneasy asking your
doctor, giving positive, practical advice on living with kidney failure.
SPECIAL
OFFER
KPA members can buy Kidney Failure Explained (Class Publishing, £14.99)
for £12.99 inc p&p - saving £5 on the normal mail order
price. To order call 01752 202 301 or send a cheque to Class Publishing
(Priority Service), FREEPOST (PAM6219), Plymouth PL6 7ZZ. You must quote
the special reference number in your newsletter when you place your order
to qualify for the discount.
Eagle-eyed readers will notice Susan Frade, previous newsletter editor, on the front cover in a canoe. The picture was taken on an adventure weekend for patients in 1992.
WEAKEST
LINK WINNER
Eileen
Quinn-Smith demonstrated her ability to cope with stress by winning an
edition of "The Weakest Link" but when told she was lucky as
she had been the weakest link on two rounds, she replied, "I played
it tactically." Eileen donated some of her winnings to the HHKPA.
The following two articles are from the July 2001 issue:
1.
Modernisation of Renal Services in West London
by Professor Charles Pusey
As most of you know, several independent reviews, over the last few years
have recommended reorganisation of Renal Services in West London. In particular,
there was pressure to move kidney transplantation onto one site, since
it was felt that each individual unit did too few operations to maintain
the highest standards. A further reason was to bring together research
activity in renal disease with the main clinical base for Renal Services.
Last, but not least, was the concept that a network of renal units, co-ordinated
from a Tertiary Centre, was the best way to provide easy access to dialysis
and outpatient services for all patients.
Changes have
occurred in the last few years. Firstly, the formation of Hammersmith
Hospitals NHS Trust led to a merger between the Hammersmith and Charing
Cross Renal Units. This was followed by transplantation in the Trust being
located at Hammersmith, but other services have remained on both sites.
During this time, a number of satellite dialysis units and outreach clinics
have been developed. The second major development was the incorporation
of the Royal Postgraduate Medical School at Hammersmith and the Charing
Cross and Westminster Medical School into the Imperial College School
of Medicine (ICSM).
As part of the Review of Specialist Services across West London, the latest occurrence is the plan to develop a unified Renal Service by merging existing services at St Mary's and Hammersmith Hospitals NHS Trusts. Many of you will have been involved in the public consultation. After considerable discussion, all parties agreed that the Tertiary Centre should be located at Hammersmith Hospital. The Tertiary Centre would be responsible for renal transplantation and certain specialised investigations and treatment, and would also act to co-ordinate services at other units. A Secondary Centre would be maintained at Charing Cross, with inpatient and outpatient facilities for nephrology and dialysis. Inpatients from St Mary's would move to Hammersmith, but dialysis outpatients and an inpatient consultation service, would be maintained. Importantly, it was planned to extend the number of associated satellite units, and to increase the range of services available at these units. This plan goes a long way towards achieving our aim of providing a better service for all patients. Specifically, it brings together the transplant programme on one site, allows colocalisation of the major research and clinical work, and improves the range of services available near to where patients live.
It was recognised early on that the existing wards and dialysis unit at Hammersmith would not be adequate to cope with the requirements of the Tertiary Centre. After considerable debate, it was decided that a new building was the best solution, and this proposal has now been agreed. The proposed building will be located between A Block and Hammersmith House and will contain a new dialysis unit and reception area on the ground floor, and four wards on the first and second floors. There will be a high dependency unit, a "step-down" or medium dependency ward, a low dependency ward, and a short stay and investigation ward.
Now that
this decision has been taken, it is in everyone's interests that our plans
move ahead as quickly as possible - our aim is to have the new building
open by 2003. I very much hope that we can go ahead as planned, so that
the benefits of the new Tertiary Centre are available as soon as possible.
In the meantime, we intend to develop a joint management team to co-ordinate
Renal Services across the existing units. A scheme of this size will not
be without its problems, but I feel sure that it will be successful if
we all work together, and that the results will be well worth the effort.
2.
Question and answer
I thought pig kidneys were ready to be transplanted into humans. Why
is there a delay?
In the mid 1990's, there were reports in the media which gave the impression that within a few years, animal organs might be ready for transplanting into humans. This optimism followed on from two important developments:
- The relatively successful transplantation of baboon livers into two patients with severe liver failure in America (although the livers worked, the patients died after a few months from complications)
- The breeding of 'transgenic' (genetically altered) pigs in the UK. Organs from these pigs, were shown to be resistant to the early and aggressive rejection response which humans mount against a pig organ
However, in 1997, it was discovered that pigs harboured a type of retrovirus that could infect human cells. This has generated a great deal of worry that pig organs might not be safe to use in humans and led to a temporary ban on their clinical use.
As more facts become available, several things have become clear. First, the people that have been transplanted with either pig cells or organs (and there are more than 100 of them in different parts of the world) show no sign of retrovirus infection. Second, there are some pigs that appear not to transmit the virus to human cells. Third, it is clear that many of the other diseases that pigs carry can be successfully eradicated from herds by breeding in especially clean conditions.
There is a growing confidence that clinical trials of pig organs, including kidneys, will be sanctioned in the next few years. It's not yet certain which patients will be offered pig organs in the first instance, but these initial trials will be small and designed to address whether pig organs are safe, will function and whether modern drugs will be able to prevent rejection. Assuming these are successful, it is reasonable to expect full-scale clinical application within the next decade or so.