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The largest kidney patient charity in the UK. Run by kidney patients, for kidney patients.

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Useful information and NKF position statements when dealing with The Press, The Media or other authorities.

7.7.14        National Transplant Week

                 There are not enough Transplants. We need more donors to sign up to the register. Donors must tell their relatives of their wish. Three people die each day from CKD. Living donation is a good thing and saves lives. 

2.7.13

The NKF (National Kidney Federation) supports a change to “Opting out” (sometimes known as Presumed Consent) and therefore welcomes the Welsh Bill that will introduce a “Soft Opt-out” system for Transplantation in Wales. The NKF wishes this initiative well, and hopes that if successful it will be the forerunner to introducing an opt-out system throughout the UK.

30.6.13

The NKF believes that donors from Black, Asian and Minority Ethnic backgrounds (BAME) must urgently come forward if the prospects for those requiring transplants are to improve.

30.6.13

The NKF believes that all renal patients approaching Dialysis should be offered all suitable choices of therapy, and these choices should include, pre-Dialysis Transplant, Haemodialysis, Home Haemodialysis, Peritoneal Dialysis and Assisted Peritoneal Dialysis. Each Unit should have a Clinical Champion and a Patient champion appointed to ensure this is done.

30.6.13

The NKF believes that Kidney Transplant operations should double in number – from around 3,000 per year to 6,000 a year and calls upon NHS Blood and Transplant to put in place a strategic plan that will reduce the current wastage of potential organs and achieve the 6,000 figure as a matter of urgency.

13.2.12

The NKF favours the issue of an organ donor card to all those signed up to the Organ Donor Register which carries both the donor’s signature of consent, and the next of Kin’s signature, which confirms that they fully understand the wishes of the potential donor.

13.2.12

The NKF believes that the number of organs retrieved from Hospitals would be increased significantly by the provision of more intensive care beds.

3.2.12

The National Kidney Federation utterly condemns the trade in organs for profit, and sees this as a trade in human misery. The NKF understands that shortages of available organs will tempt patients to leave the UK in search of organs they can purchase, however the practice is frequently illegal and fraught with danger. The Federation does not advise any patient to seek a transplant operation in this way.

3.2.12

Whilst the Federation agrees with legislation that makes it a criminal offence to aid and abet the procurement of organs for money, it does not believe that patients who seek organs in this way should also be guilty of an offence.

3.2.12

The Federation is willing to look closely at any proposal brought forward by Government to pay for organs, provided that they maintain responsibility for the quality and allocation of such organs purchased by the state.

3.2.12

The NKF believes that the Dialysis Tariff (the amount of money that the provider recieves for providing dialysis) should be set at a level that does not restrict Dialysis choices and does not restrict opportunities for “Dialysis away from the patients base unit” or hamper in any way an expansion of Home Dialysis.

3.2.12

The NKF supports Living Donation and applauds altrusitic donors.

3.2.12

The NKF believes that Accident and Emergency units in hospital should be brought into the Transplantation system, and rejects the current practice whereby most hospitals only seekout potential donors from Intensive care units.

3.2.12

Every day 400 people die in the UK who are signed up to the organ donor register, yet only 4 kidneys are transplanted each day from deceased donors. The NKF believes that this figure can and must be increased by better NHS performance.

3.2.12

The NKF favours a change to “Presumed Consent”, so that the UK system became one where people have to “opt out” of inclusion on the register and not one where they have to “opt in”, however the NKF believes that changes to the Transplantation system and infrustructure within the NHS will provide more transplants than altering the system of donation.

3.2.12

There is a particularly high prevalence of Chronic Kidney Disease within Black and Minority Ethnic communities, the NKF campaigns to increase awareness within and outside these communities.

3.2.12

The NKF wishes to see more people signed up to the organ donor register - currently 18 million people are on the register in the UK.

3.2.12

The NKF regards Transplantation as the gold standard treatment.

3.2.12

The National Kidney Federation believes that all kidney patients should have access to a dedicated renal social worker sourced by the National Health Service (NHS) or other NHS approved body.

3.2.12

The National Service Framework for Renal Services highlights the importance of good transport for all dialysis patients and suggests that it plays a vital role in the formation of patient views and attitudes towards dialysis. It acknowledges it is important that they are picked up quickly and transported efficiently to their dialysis destination.

3.2.12

The National Kidney Federation believes transport for dialysis patients is as fundamental a part of their care as the clinical service they receive. After dialysis patients can feel tired and unwell, this coupled with other co morbidities, result in the majority of patients being unable or unsafe to drive themselves and thus reliant upon patient transport services.

3.2.12

The NKF believes all dialysis patients should be eligible for Patient Transport Services with the cost of transport explicitly included as part of the costing for their dialysis treatment. Like other NHS treatment it should then be free at the point of use. There should be no direct charge to a dialysis patient for patient transport services.

3.2.12

Eligibility criteria for transport should be made explicit to include the special reliance of dialysis patients on transport in order to receive life saving treatment. This inclusion would reinforce that there should be no direct charge to dialysis patients for their transport requirements to receive that life saving treatment.

3.2.12

It is acknowledged that some dialysis patients would prefer not be reliant upon Patient Transport Services. As a result of this we are in support of the National Learning Set recommendations that by reimbursing costs of the patients own transport, providing free and accessible parking and by facilitating choice then those patients as appropriate would make their own travel arrangements and reliance on commissioned transport services would be reduced.

3.2.12

Approximately 3,000 kidney patients die each year, 400 of whom were waiting on the Transplant list for a donor organ.

3.2.12

Approximately 23,000 Stage 5 kidney patients have a Kidney Transplant.

3.2.12

Approximately 33,500 Stage 5 kidney patients are treated by Dialysis.

3.2.12

The number of patients with stage 5 Chronic Kidney Disease is growing at the rate of 4% per annum.

3.2.12

There are approximately 56,500 people in the UK with Stage 5 Chronic Kidney Disease. This stage makes life without treatment impossible.

3.2.12

It is believed that up to 3 million people have early stage Chronic Kidney Disease in the UK, but that if they lead a healthy lifestyle and their kidney function remains stable their condition will probably not have any adverse effect on their lives.

3.2.12

The National Kidney Federation (NKF) has a working relationship with many pharmaceutical companies and this works to great advantage. The nature of the support that an industry partner may give can vary, but essentially it usually comprises of an annual donation to assist with the costs of our core activity, office and staffing, plus assistance either practical or financial with a particular project that will assist kidney patients.

The NKF always likes to establish a close working relationship with these industry partners and in particular likes to encourage the relationships to be long term. It is of prime importance to the NKF that its commercial neutrality is scrupulously preserved so that the interests on one company over another are not advanced by the NKF, or the interests of an industry partner are not put before the interests of kidney patients or carers. The independence of the National Kidney Federation is one of its most important assets, and is one reason why Government is prepared to listen to the NKF over and above commercial bodies. This independence will never be sacrificed in return for financial support.

3.2.12

There are many areas of renal care where companies from the private sector seek contracts to provide completely, or share, the activity with the NHS. The running of Dialysis Units is one example.

The National Kidney Federation does not oppose in principle this involvement by the private sector, however it is imperative that when such contracts are signed full safeguards are put in place to protect the standard, quality and adequacy of the service being provided, both at the time the contract is signed and in the future.

Contracts need to ensure that the holistic (or fringe) benefits that a patient receives under NHS provision are not lost when the activity moves to the private sector.

The NKF advises all Kidney Patient Associations (KPAs) to become involved in any negotiations and “bidding” process being undertaken to ensure the “patient voice” is heard, and advises KPAs to keep the NKF fully informed of any such proposals.