All Party Parliamentary Kidney Group

12 July 2007 Dialysis Summit
All Party Parliamentary Kidney Group
Co-Chairmen Dr Evan Harris MP, Janet Dean MP, Lee Scott MP

Meeting chairman Dr Evan Harris MP

KEY POINTS

Donor organ task force investigating all aspects of organ donation.
Problems with holiday dialysis caused by lack of capacity. Some cultural issues but capacity predominant. Particularly H/D extremely difficult.
18 weeks too long to wait for vascular access. NSF should be made mandatory — work to be done to link policies.
Current dialysis capacity is sufficient? Working at Red light full and having to offer twice weekly dialysis.
Dialysis managed by Crisis management. Capacity limited by capital investment.
Clinicians agree capacity insufficient. No spare capacity.
How are capacities measured? Certain parts of the country have sufficient so it can be planned. Possible to get capacity right.
Plans up to 2013 well progressed in some areas but only in planning stage in others.
There are regional variations in capacity. Age and ethnicity should be major drivers in some area.
Trusts have responsibility to maintain units. Plans should be put in place and funding is in the system for this.
Direct measures for capacity to meet the need now? Real time information not available. Renal Registry data 15 to 18 months in arrears.
Renal Registry have new initiative to provide easily understood data, accessible to patients.
Despite planning it is impossible to catch up as well as expand. Something needed to get motivation.
Measurement of number of dialysis stations per million population crude. 500 stations met. Another 500 over the next 2-3 years needed. Funding depends on therapy price.
Important NSF is kept on Agenda. Commissioners need to drive rather than be driven and need to set standards to drive.
If Commissioners understood issues they could be addressed. Commissioner knowledge and empowerment is key to the issue.
Nottingham paediatric renal services covers 6 million and crosses several boundaries. Difficult for Commissioners to understand what they want. Understanding is key issue.
SHA job is to work with Commissioners.
Home based therapies – where do Commissioners see role? Minority of people who want this therapy. Capital not there to fund the machines and home changes. Patient perspective is that they want the opportunity to choose.
Patients are told choice is not there. Patients are often not educated on the choice.
What are financial restrictions of offering choice? Cost per treatment needs to be correctly geared. Choice can be offered but not if all wanted HD because of capital capped.
PCTs won’t fund HD.
Too easy to put patients on HD. NHS investment needed to train staff on Home therapies. Assisted APD an excellent treatment but too expensive. Transport costs should be used to offset cost of AAPD. One unit in country doing this. More patients should be treated in satellite units closer to home to reduce transport costs.
Commissioners do not have capital – look more creatively at private funding.
Twice weekly dialysis is still happening due to lack of capacity. Patients become adjusted to twice weekly and do not then want to go on to three times a week. This is a safety issue.
Key issue is how you start dialysis. Tailored dialysis is being offered in some parts of the country. Provision of choice for patients is poor.
Being unable to get dialysis away from home is down to capacity issues.
Average cost of dialysis is £350 per dialysis session. Patients spending more than two weeks away from home unit could not be funded under current funding.
Cash incentives required to allow patients to travel wherever and whenever they wish. Separate tariff for travel required.
Patients should be told it is their right to travel as they come into the unit.
Tariff system needs to be examined. When the HD tariff is right then additional items will follow.
Anyone on twice weekly dialysis should raise this as a safety issue.
Patients do not feel empowered to take complaints forward. Holiday dialysis in France is easy to obtain, but not in the UK.
Holiday dialysis — There should be one single price throughout the country for HD. Capacity problems increased when patients return to the unit due to quarantine requirements. No problems for patients travelling abroad. No guidance from DOH.
DoH should support units locally for holidays by funding a couple of holiday dialysis facilities.
Low income families who cannot afford to holiday abroad are affected most. Trust does not pay for HD abroad it is intergovernmental. More should be made of twilight shifts for holidays. Costs vary throughout the UK for HD. Restrictions to adding holiday dialysis. Four weeks leave for HD patients should be the norm for all.

Vascular access involves a different discipline. Recognition being sought by Vascular Society for this area of surgical activity. Tariff has been set for a fistula but not happening because of local variations and lack of identification as an area of expertise.
Guidance for fistula surgery already in place but need to be actioned.
Vascular access is a big problem. NSF says people should have fistula fitted 6 months before dialysis needed. In practice this is not the same throughout the country. Good vascular access makes treatment cheaper.
MRSA rates related to other infections.
Education, of doctors as much as anyone else is needed to stop patients crash landing. eGFR, primary care and hospital all need training.
Crash landers do not get choice. No education or choice, this group is hard done by.
Crash landers should be given choice by education 2/3 months after going onto dialysis.
eGFR greater number of patients being referred. Secondary care and diabetic clinics holding on to patients far too long. Educating clinicians as well as patients is necessary.
Vascular access should not be an isolated procedure. Whole patient pathway needed.
Patients fare better by education at pre-dialysis stage.
EPO used to be prescribed by GP but now prescribe from the unit. 40% reduction on cost to the unit. Saved the system £600,000. Fantastic success. Agreed should get that model
Is it the case that all patients would benefit by getting EPO through dialysis?
Since introduction of eGFR 500 people not being picked up. It is an issue with CKD patients if they are not in the system.
If you have your own budgets are you rationed?
Payment by results recommended.
Psycho/Social aspects of care not mentioned. Counselling care is an essential service. Too much left on shoulders of nurses.
APPKG may not be aware of counselling problems.
Psycho/social aspects throughout patient treatment is essential.
Phosphate control — dieticians should become supplementary prescribers. Evidence required — should be pursued as a group.
There is a Post Code lottery about the new phosphates. The key is integration of services with diabetes. Set up joint consultation groups.
Diabetics see a dietician, renal see a dietician but no integration.
Care plans need to be integrated across all areas. Dieticians to ensure continuity between diabetes and renal so we involve skills from both areas.
Integration is the key. Keen to hear from the dieticians. NSF talks of getting the information so they get better outcomes. Integrated care plans required. Sharing of knowledge between the different groups is essential.
Geographical isolation on binders. West Midlands have a forum within which discussions can take place.
Should patients be able to get the treatments, if a GP thinks they should have them?
Clinical care pathways should be found first, and then fund them and not do it the other way round.
Because of link between Renal and diabetes there is a need to create a forum for joint consultation to drive national policy. There is a huge need to integrate.
Need to offset the cost of high price binders . About 10 – 15 years behind the EPO argument.
Pressure on GPs to fall back on Calcichew which patients regard as historic treatment when better treatments such as calcimemetics available.
Some patients may not benefit from new calcimemetics.
The success with EPO is due to a number of companies producing the drug and renal units success in getting price down.
Calcimemetics is a wonder drug, not widely available. NICE has limited its access. Cost pressures on prescribing drugs. New drugs not cost effective - no competition.
Reverse tenders operating against us?
Need to get a much better evidence base, start investing in research on vascular for renal. Better position with evidence on outcomes, and quality of life.
There may be a research issue National Institute of Health Research, send request to them to consider that.
Methods of assessing cardiac function require standardisation. Kidney patients excluded from trials.
Phosphate control, down to education. Self care and psychological support. Funding also required for patients who would benefit from more dialysis.
Patient choice report concludes that until dialysis capacity is sufficient then patients would never have choice.
Patient choice in West London not good. Too much depending on attitudes of doctors. HD expensive but PD not offered widely as a choice.
50%, maybe less, on PD. Is that because of doctors preferences? Is there is no support?
Quality of choice is not good in most places, despite best efforts.
Questions whether people are getting choice. HHD down to 5% at certain units, 10-12% at others. NICE say 15%.
Manchester has good HHD programme.
Who is responsible for bringing units into line? Should DoH be asking what is happening?
DoH central to patient choice. NSF mandated Registry returns. There is a place for commissioners to be saying what is happening on this situation.
Desperately short of HD throughout the country. The need for HD is the foundation stone.
We need to have a balanced portfolio of dialysis options.
70% of people requiring HD, we need 85 – 90% for spare capacity, but would be concerned that PD would be constrained.
Cautious about how HD expanded. If expanded by private sector, choice for PD and HHD will reduce. We have to expand HD, but heed caution about no choice. HD expanding via private funding, mixed choice must be available. Allow development of flexible treatment. Half people on HD die within 3 years. Needs a new approach to encourage choice. Discussion needs to be up front on HHD and APD.
Can be helped by transplant we are not helping enough.
If expansion on HD through independent sector then need strategy meeting to agree proportions. Choice for HHD, PD and transplantation all being looked at.
If patients choose not to go to a particular facility independent sector get paid for patients they treat.
No direct obligation to put people on HD in new independent sector units? No indirect pressure to fill units.
Clinicians and patients choose. Commissioners job to produce the facility.
Private companies react to the need. PD has been included in some units.
Under impression you could not get NHS funding for a new build.
There is an option but it is difficult to get. Core NHS PFI NHS.
South Yorkshire good PFI example.
Elderly patients being given option of APD at home, this saves transport costs and frees up capacity in the unit. If there is a problem with the machine, then they go into the mother unit for top up.
Patients initially vulnerable and If steered towards a particular modality by their doctor then they will accept that.
Has there been a survey asking patients if they were asked about choice.
MRI did survey some years ago – results 16% of patients felt choice inappropriate because of condition. 20% or less thought they did not have part in decision making process.
Unit HD and HHD offering self care, patients only want to do some issues then expand on that.
Demonstration of PD and HD given at Patient information days but most people bewildered at the end of the session. Education is necessary.
20% will not have a choice if they crash land. People absorb information at different rates some need it to be provided over a period of time.
Choice sometimes based on non-medical decisions.
Quality assure the dialysis educational programme then survey the patient to ask their opinion.
Investigate the outliers to quality assure their perception of treatment
Need to provide more treatment choice. Nephrologists would vote for home based treatment. If good choice for nephrologists why not for patients?
Get more ‘listening workshops’ and listen to what patients have to say to get improved patient choice.
Is there an issue about transplant assessment and listing. Can we rely on the transplant waiting list, if suppressed then we are corrupting the results.
Why has there been a change in transplant assessment preventing patients receiving a transplant who would have done so 10-15 years ago.
Choice of having a transplant have taken away from patients who have had skin cancer. Should be patients my right to have another transplant and other minor operations. Should be national criteria on listing for this.
Renal Registry data shows a wait of 6-12 months before being listed after dialysis starts. Why does it take so long to get people listed and why such a large demographical difference? Data available. It should be discussed with patients, listen, provide the psycho/social support. If we had sufficient organs it would increase listings.
Need more organs, and if patient well enough and doctors willing then patient should go on list. But there are a lot of issues.
Is it reasonable to have national criteria for listings evidence based? What is preventing that?
Needs to come from the professional team and patient forums. Audit against that.
NKF support this but think this would be uncomfortable for UK Transplant. 400 dying on the transplant list. 3000 dying on dialysis. If we rectify the figures, number would be huge.
Drive to expand transplantation supported by Renal Association for an increase in living donor, Non Heart beating Donation.
No easy solution to the gap between those on list and number of organs available. There are agreed guidelines for listing, but not mandated. Standard that patients are listed on cadaveric waiting list following 6 months on dialysis. Regional difference.
There should be an Ethical boundary. NICE guidance to make it open and transparent.
5% of people die on dialysis, transplant are much lower. The 400 figure is misleading. Transplanted for 10 years saves half a million. We have to give organs to those most likely to benefit. What about the high risk patient who gets offer of a kidney from a family member. There is a responsibility to the donor and guidance on Quality of life overriding for the patient. If donor happy for life expectancy of two years post transplant then it should be offered.
Ask Alan Johnson if he agreed there was rationing.
South London has criteria. Auditing system lacking.
Need to spread good practice including an increase in cadaveric. Certainly needs to be transparent.

National Programme.
DoH should expand Patient View system to get results at home.
Need to receive results Pre-dialysis. This can be picked up from unit.
Transport and parking — wide variation in all areas on charges. All renal patients including blue badge patients are charged.
Is that a common experience charging renal patients to park even blue badge
Can something can be done about it to bring into line.
Only 4 options. 1. Pay — 2. KPA finance the NHS cost recovery plan — 3. Get it free. 4. Patients who drive should be recognised as subsidising transport. Should be paid per mile or get free parking.
Exeter used to charge £10 for parking - now listening to the patients.
Take the report from Cheshire and Merseyside and import into other unit plans.
Patients suffering with parking charges should write to MP. Health Select Committee looking into car parking.
Transition of paediatric patients onto adult unit. Paediatric unit well supported, go to adult unit it’s like a desert. No social worker in lots of units. Get focused on this, needs more of a guiding hand from nephrologists leading them into adult unit.
TV and telephones — recent report, minister claims TV systems at half price — lots of patients still suffering. Communication with the companies is not good.
Renal View will be excellent system. KPAs need to be included in discussion
Transport big issue, the report from Cheshire and Mersey supported by DoH.
We need to keep pushing on with this challenge. Audit Health Care Commission for faster access, transport, crash landing,
Paediatric - youth worker system fantastic. Should have pathways for young people. — Model needed. Good work happening in Birmingham which should produce good results.
Phones — Agreement on use of mobile phones in hospitals not being promoting as much as they should do.
Trust being sued by hospital provider because they are breaching the contract which states that mobiles phones are not allowed.
Parking unacceptable for dialysis patients. Happy to support this along with BD

Renal Commissioning
Currently commissioned as a specialist service? Some questions as to whether some aspects of renal are to be taken out of commissioning and given to PCT.
Important sufficient volume of dialysis activity that commissioning can be informed
If Carter implement in each SHA will be able to build on this. Carter not being implemented to same level in every area.
Not enthusiastic about dialysis being taken out of Specialised Commissioning?
Not keen for commissioning of dialysis to go outside of Specialised Care. PCT cannot act on their own. Not in the interest of the patient to do this on HD
31 PCTs across London. 5 PCTs in South West London. Need to get right level of commissioning to get the right level of expertise. Practice based commissioning. Need to integrate the commissioning to ensure everything equal across population.
Important renal retains its specialist status. ESRF remains specialised service. Concerned about 10% of people on CKD. Very different about the numbers of people on dialysis. Essential it stays as a specialised service.
Commissioning subject of debate during National Definition Set as to whether renal should remain a Specialised Renal Service. Significant number of commissioners, who say it should be taken out, but others say NO.
Some thing if Dialysis remains specialised service, commissioning should be done by PCTs. Debate in coming months.
Renal service RSCG — debate lengthy — commissioning of planning of those services. Communication methods right it can be successful. PCTs like Specialised Commissioners to do commissioning as they have no experience.
Commissioning across the whole pathway — link to PCT to look at the totality of care.
Balanced style of care required — tariff complex therapy area.
There are other advantages not being a specialist Commissioner. It is about getting the commissioning right. Different models should be used to get the care right.
Need people to stay in Commissioning groups long enough to understand the problems.
Alan Johnson said there would be no more structural changes to PCT for the foreseeable future.
There is some merit in putting dialysis or relatively predictable services into normal commissioning, it ensures it is done properly by getting it in the operating framework.
What is the time scale for decision on whether some services pulled out of specialist services?
It is important to get a system that works, and not concentrating on the system.
Payment By Results cannot be dealt with now.

APPKG to do work on this and payment by results, and the discussion on CKD. Ministers need to be kept informed of developments.

new NKF logo The National Kidney Federation is registered in England and Wales as a Company limited by guarantee (Company No 5272349) and awarded charitable status (Charity Number 1106735). Give as You Earn contributions No. CAF GY511.

Registered Office:- The Point, Coach Road, Shireoaks, Worksop, Notts S81 8BW, Tel: (01909) 544999, Fax: (01909) 481723, Helpline: (0845) 601 02 09, E-mail: Follow us on twitter

Union Flag This website is intended for UK residents only.
If you have any comments about this site, please EMAIL the webmaster

Page created: 15 August 2007

Last updated: 29 April 2009