Renal NSF update July 2008

The Renal NSF update for July 2008 is available here

A dialysis menu for all!

Russell gave up his work as a welder to care for his partner Carol when her advanced kidney disease became symptomatic. He took on the shopping and cooking as well as providing the other aspects of care and support during Carol’s time on dialysis. When Carol was transplanted, Russell used his new skills to gain a place at Bolton College to get a formal cooking qualification. This led to a 2 week work experience at the famous Midland Hotel – the “jewel in the crown” of the Manchester Hotels. The Midland knew talent when they saw it and now Russell is one of their key chefs.

Working as a professional chef, Russell sees the central role of diet in healthy living and the fun eating out together can be. That’s difficult for people on dialysis. Russell and his colleagues at the Midland Hotel therefore hosted a dinner – not only safe for dialysis patients but also mouth watering and tasty for all - on the weekend of the 60th anniversary of the NHS.

The first Salford Royal Foundation Trust dialysis patients dinner was a great success. More than 80 patients, carers and staff attended, there were tables from the Bolton, Rochdale and Wigan as well as Salford haemodialysis units and people on both home dialysis and peritoneal dialysis. The food was delicious. For the meat eaters we had smoked haddock & salmon fishcake, followed by chicken with a red wine jus and the vegetarians received a butternut squash risotto followed by a baked asparagus and leek filled filo pastry parcel with herb and butter sauce. Both main courses were accompanied by oven roasted potatoes and seasonal vegetables with lemon tart & raspberry coulis for dessert and coffee to finish.

Russell and Diane Green (Renal Dietitian in Salford) spoke about choosing, preparing and combining a whole range of “forbidden” foods to show how this and other appetising menus can be created.

Jane Macdonald, (lead kidney care nurse at Salford Royal and President Elect of the British Renal Society) was the master of ceremonies, introducing guests Jean (committee member, Hope Hospital Kidney Patient Association), David Dalton (CEO, Salford Royal) and celebrity chef Lawrence Keogh (Head cook, Roast Restaurant, London). Lawrence is star of BBC’s “Saturday Kitchen” and gave a terrific talk explaining what it was like and how he managed on dialysis. Like many people, dialysis hit him head-on and the lack of preparation made it really difficult. All the while, he was working, running a restaurant and even opening new ones whilst coping with the dietary restriction (and keeping his PD fluid warm in the kitchen!). Lawrence’s new book of recipes for people with kidney disease should be available shortly and Maxine (Lawrence’s wife), told me that this year was going to be a busman’s holiday – Lawrence cooking dialysis recipes to get them just right for his book!

David Dalton commented that the evening gave him a unique opportunity to meet with people on dialysis, their friends, families and carers. It was a rare chance to hear “real” stories about the issues facing people with kidney disease including parking, transport, dietary and other lifestyle restrictions and see first-hand the courage and fortitude of many such patients.

Given the focus on patient experience; and given that for many people on dialysis the experience is the outcome, it was a fitting way to start the next 60 years of the NHS.

Well done Russell and thank you!

images:

Donal O'Donoghue, Russell Atkinson & Carol Brennan, Marie O'Donoghue, Lawrence Keogh

Dessert: Lemon tart with raspberry coulis

Top up payments for kidney care?

In response to the recent bowel cancer cases that have been in the media, the Secretary of State has asked Mike Richards (my counterpart for cancer services), to lead a review of the consequences of additional private drugs for NHS care. Mike is an obvious choice to lead that review – not only because of his track record and credibility but also as most of the attention to date has been given to the new expensive cancer drugs that have become available over the past few years.
As part of the review I have been asked what drugs for people needing kidney care are being bought privately or might be in the future if the rules on “top up payments” are changed. I have asked the National Kidney Federation, professional societies and the Association of Renal Industries that represent the companies whose products are used in kidney care to comment and if they know of examples where top ups are occurring to supply evidence to feed into the review.
The terms of the review are clear – to examine the current policy relating to patients who choose to pay privately for drugs that are not funded on the NHS, to make recommendations on whether and how policy or guidance could be clarified or improved and in making recommendations to take into account the importance of enabling patients to have choice and personal control over their healthcare and the need to uphold the founding principle of the NHS that treatment is based on clinical need, not ability to pay. The terms of reference are confined to the purchase of drugs not wider services such as physiotherapy or for instance transport for dialysis. Mike Richards however does recognise that other issues are likely to arise as the review proceeds and is at pains to point out that the review is not confined to cancer.
My call for evidence has uncovered a few examples where individuals have paid for the drug Cinacalcet that is used to treat secondary hyperparathyroidism in end stage kidney disease. Cinacalcet underwent a technology appraisal by NICE in 2007 and was recommended for the treatment of refractory secondary hyperparathyroidism. Refractory was defined in terms of the PTH level with poor or no response to standard therapy “and in whom surgical para-thyroidectomy is contra-indicated”, in that the risk of surgery are considered to outweigh the benefits. That caveat, or rider, is I suspect being interpreted in different ways in different parts of the country. I have also received other examples of top ups related to installations for home haemodialysis but no report yet of individuals having to fund their own Erythropoiesis stimulating agents, particular immunosuppressive protocols or the newer phosphate binder, all of which are potentially expensive treatments. If you know of instances where patients with kidney disease in England are having to fund treatments privately please do let me know.

bedtime reading: End of Life Care strategy

Today the government published the first national End of Life Care (EoL) Strategy for adults in England. This is very important for people with kidney disease and the kidney care community.
One of the key achievements of the Renal NSF was the inclusion of a chapter and quality requirements for supportive and end of life kidney care. Earlier NSFs were weak on this topic and yet a peaceful death in the patient’s preferred place of care with family support is an integral part of good medical practice. The fact that dialysis is often a palliative treatment – it doesn’t cure renal failure, and that when given the space and time to consider the options many frail individuals choose the “no dialysis” option is a unique feature of the supportive and end of life care kidney care pathway. My sense is that it has a much more defined start point than in many other organ failure situations.
The Renal NSF therefore laid some of the foundations for the EoL Care Strategy which aims to deliver increased choice to all adult patients, regardless of their condition, about where they are cared for and die and to improve care given in all settings to patients, carers and families.
The overarching strategy has been developed over a 2 year period by Professor Mike Richards and the End of Life Team and a wide range of stakeholders and experts. I am particularly grateful to many people in the kidney community including Dr Aine Burns (Consultant Nephrologist, Royal Free), Liz Cropper (Consultant Nurse, North Staffs Royal Infirmary), Dr Ken Farrington (Consultant Nephrologist, Lister Hospital) who were members of the working groups and to many others who contributed to the work programme. It has been further shaped and strengthened by the work of the SHAs as they developed a vision for end of life care for the NHS Next Stage Review and again, many of these contain scenarios and examples of kidney supportive or end of life care, contributed by kidney care professionals or palliative care colleagues with whom we are now, I am pleased to say, working more closely.
This is the first time the country will have a long term, comprehensive strategy for the care of adults at the end of their life. The strategy sets a clear direction for the development of EoL care services over the coming year. It sets out a range of recommendations for improvements in care, covering an array of services and staff groups in both health and social care. Key recommendations in the strategy focus on providing improved community services, workforce development and the increased provision of specialist palliative care outreach services. It sets out the responsibilities of all involved in the delivery of EoL care and gives information on increasing government funding to support the development of services.
Check it out. Most of it is generic but you won’t be disappointed if you do a word search. I think it is well worth reading in entirety. It will form one of the cornerstones for developing our supportive and EoL kidney care programmes on which I have asked Stephanie Gomm (Consultant in Palliative Medicine, Salford Royal) and Ken Farrington (Consultant Nephrologist, Lister Hosptial) to lead. Mike Richards’ slideshow, available at the same link, will give you the headlines including “research and audit”, "outcome and patient experience measures”, “workforce development” and the levers to be used – finance, local strategic planning, provider organisation responsibilities and national support.

Second national kidney transplant patients' forum 28 June 08

Listening to patients can be difficult. Not because they use difficult and incomprehensible language but because they may have things to say that make me, as a healthcare professional and now policy advisor uncomfortable. The National Kidney Transplant Patients Forum, now in its second year, provides an opportunity for people who have received a kidney transplant to get together, to share experience, learn from one another and make some of the points that might not otherwise be heard. The forum hasn’t been set up with rules and regulations so nothing is off limit. It seems to me a good way to engage with patients.
People want to know lots more about the drugs they are asked to take – how they work, what side effects, how do you really know you are on the right dose? People want to know about getting back to work – the stories and the work arounds I heard provided a rich tapestry. Nutrition, diet, recipes.
By the very nature of the condition and the self selection to attend the group may not be truly representative as they say on Question Time. Not that unrepresentative though – people from far and wide, of all ages, from all backgrounds and cultures but with one unique thing in common – the gift of a kidney.
Meeting with patients in these kinds of settings is easily the most satisfying aspect of the job I am doing at the moment. The views and comments help shape policy and deliver implementation strategies. Public and patient involvement in every aspect of the NHS is one of the key levers in bringing about transformational change – apologies if that sounds a little bit of a buzz phrase – but put more simply, doing the right thing, in the right place, at the right time, every time.
Dr Faieza Qasim (Consultant Renal Physician, Manchester Royal Infirmary) has been the organising force behind the forum but those attending the forum have shaped the programme and set the agenda. The programme and workshops were, quite rightly, dominated by patients and carers with healthcare professionals including Bernie Boruch (Renal Social Worker), Jon Courthold (Clinical Psychologist), Marc Vincent (Senior Renal Pharmacist) and Emma Goulding (Clinical Scientist, Tissue Typing) providing great support and information; but I think the questions were really being answered by the patients working together.
Marinella Crane did a marvellous job on sorting out logistics for the event which was held at Chancellors Conference Centre. The venue is set in extremely convivial surroundings in Manchester (no, that is not an oxymoron!) and 28 June was a beautiful sunny day. I had been asked to give a short presentation on “improving outcomes in advanced Kidney disease”. I talked about safety, experience and outcomes of care – 3 of the key patient facing dimensions of quality. Of course I learned more from listening than from talking.

Hope represents kidney care at NHS celebrations

Congratulations: 60 years ago the NHS was born, in Manchester at Park Hospital, Trafford. Aneurin Bevan’s vision of a national service, universally available to all, irrespective of their ability to pay, served as the inspiration for the modern NHS we see in action today across the country. Since that time, the NHS has served our communities well and we are rightly proud of its achievements.
In 2006, The Commonwealth Fund ranked the NHS the highest performing service in a study of many of the world’s industrialised nations, higher than the USA, Germany, Sweden, New Zealand and Australia.
I was privileged to be invited to the ceremony at Westminster Abbey on 2 July 2008 to celebrate this achievement but unfortunately was called to another event. Jonathan Hope (kidney transplant recipient from Guys & St Thomas’s Hospital) attended in my stead and, from his feedback (and in his own words) “the highlights of the ceremony included Bevin's inspirational broadcast signalling the establishing the NHS where he talked about revealing and treating the nation's `silent suffering. This was supported by a patient describing in uplifting detail how the NHS healed his tongue cancer with a couple of months, giving him back his voice and a padre who gave the main sermon advocating that the future of the NHS hinges on the ability of clinicians to shift to a whole person approach! Inspirational and uplifting stuff!”.
A little known fact is that, in the famous photograph of Aneurin Bevan at Park Hospital, the young lady in the bed is suffering from post streptochoccal glomerulornephritis – a condition that is now vanishingly rare in the UK probably because of a combination of public health measures and shift in the antigenicty of the bug.
The burden of chronic kidney disease of course continues to grow. Latest estimates suggest that around 10% of the overall adult population have some degree of CKD and we know from the Renal Registry and our own practice that advanced kidney disease grows year on year. With an aging population it is likely that the requirements for dialysis will continue to grow year on year for at least the next 15 years however good we get at increasing organ donation and transplanting our patients.
The greatest asset (by a long, long way), of the NHS is its staff. Despite the image of hospital services in the papers when I speak to patients they are nearly all pleased with the quality of care that they have received. They comment on people going out of their way to make appointments work for the individual, the care and compassion of nurses, the importance of other key specialist members of the team – dietitians, social workers, technicians, physiotherapists, speech therapists – the list is long.
Individuals respect and believe their doctors more than nearly any other group in society – certainly more than politicians and senior managers. This anniversary is therefore a good time to reflect on what we want for our service over the next decade to meet the aspirations of the public and the challenge of increasing demand. We need to go beyond reform to transform. We need to recognise the importance of patients’ experiences as much as outcomes. Nationally, we now spend over £100 billion a year on the NHS. We have some of the best staff in the world. Our services are not yet world class – but they can be, each and every one of us has a role to play in achieving that.

Darzi Next Stage Review "High Quality Care for All" - this means people with kidney disease as well

The final report of the Next Stage Review, “High Quality Care for All” was published on 30 June 2008.
This is an enabling report, aimed to support the implementation of the long-term vision that each SHA in England has set out.
As the title implies, there is a strong focus on quality of care in the overarching national report.
On Monday at the Royal Horticultural Society, we had to endure the "jokes" about the process being “no bed of roses” and the Ministerial Health team being “the blooms in Alan Johnsons team” as well as the summer heat in the main hall - some of you may remember it from MRCP or other exams.
I attended the launch meeting where David Nicholson, Chief Executive of the NHS advised the following:

• Don't wait for central guidance;
• Make trouble if quality isn't being delivered;
• Put patient care at the centre;
• Each of us must take responsibility for transcending the organisational barriers to delivering high quality care

Several of the SHA documents mention kidney care in the long term conditions and end of life work streams and the report provides a further platform for improving quality of kidney care.

Announcing the new National Kidney Care Audit

We are always striving for improvements to renal services, and I am delighted to say that The NHS Information Centre, in partnership with the Renal Association has set up a new National Kidney Care Audit. This will measure two key areas where I think we can make a big difference to patient care: vascular access and patient transport.
The vascular access audit will build upon the current renal registry data collection process, and will look at the timelines and appropriateness of surgery for vascular access whether that treatment meets Renal Association and Vascular Society guidelines.
The patient transport aspect of the audit will be carried out through a survey of patients, renal units and renal commissioners. This will take place on 15 & 16 October, and The NHS Information Centre will be contacting all renal units very soon with information on what they need to do to take part. I really hope everyone will take part in this important survey which I really think will drive up the standards of patient transport services.
As a member of the Project Board for the audit, I am helping make sure that all the information collected will lead directly back to patient care, and I am confident that it will make a big difference.
One thing that’s really important about the audit is that it’s being done in partnership with the renal community. I would particularly like to thank Richard Fluck from Derby Hospitals, Jenny Scott from the North West Specialised Commissioning Team, Alistair Chesser from the Pan Thames Renal Audit Group and Bob Dunn from the National Kidney Federation for their input. I would also like to give an honourable mention to Julie Henderson and her team at the NHS Information Centre for all their hard work so far.
I hope that all renal departments will fully support the audit and will be updating you on its progress over the coming months. More information can be found on the NHS Information Centre website , and queries should be sent to kidneycare@ic.nhs.uk