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

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The NKF response to NHS England consultation on prioritising specialised services

The NKF response to NHS England consultation on prioritising specialised services

 

NHS England launched a new consultation about how it will prioritise which specialised services and treatments to invest in.

Within the document was a proposed set of principles which will underpin the future decision making process for investment in specialised services. 

The consultation document also outlined the characteristics of the process NHS England will use to make these decisions.


The NKF has responded to questions from the document below:

a)    The Principles

Q1. Do you have any comments on the principles (listed in paragraph 19 above) that we have proposed to underpin the process for making investment decisions about specialised services?

The NKF understand clearly the ‘principles’, however implementing the aforementioned principles with resultant action, professional input, patient input, carer input and charity representation is essential in order to record actual lived experience of a specialised service, including quality, variation, weakness of delivery and opportunity for improvement in particular.

The NKF have been very disappointed with the way in which NHSE have recently consulted on proposals to change arrangements for commissioning dialysis services and proposed significant cuts in the tariffs for dialysis.  While we greatly welcome such ‘principles’, clearly for our organisation and the patient/carer community which we support and represent most effectively, the priority which we seek is far greater and meaningful consultation at an early stage,  with the opportunity for sustained collaboration.

Q2. Are there any other principles that you think NHS England should adopt as part of its process for making investment decisions about specialised services?

In terms of Renal we would suggest investment decisions should be significantly influenced by the renal community which includes the NKF as the largest kidney patient charity in the country. There is currently significant variance of service delivery, opportunity, access and resultant patient inequality, ultimately leading to variance in outcomes and quality of life.

With particular reference to dialysis services we believe there is opportunity to assess current practice and modality choice and utilise the pricing or tariff structure in order to incentivise options. Such practice will improve patient choice, leading to patient-centred care which empowers the individual to access improved outcomes and quality of life with the benefit of being less costly in terms of treatment, drug protocol required, in-patient stays, patient transport, and psychological burden to each local Trust and to the overall NHS budget.

 

 

b) The Process

Q3. Do you have any comments on the proposed process (described above in paragraphs 20 –24) for making investment decisions about specialised services?

It would be useful to have more detail and clarity around the second, third and fourth order treatments and what these actually refer to and include; paragraphs 22-24 also appear to be short on detail or over complicated in language. It may well become apparent from further NHS England consultations and proposed workshops but at the moment it is a challenge to understand.

Q4. Are there any additional stages in the process that we should consider introducing?

No

Q5. Are there any additional stages in the process, where engagement with patients and the public should take place?

Yes, we believe there is an obvious need for greater patient and carer engagement in the scanning process in particular. Involvement in ‘building the clinical case’ is welcomed however we consider that for true engagement to exist, where the patient and carer for that matter are placed at the centre then then meaningful, honest and representative engagement must exist at every level.

NHS England and health care within the whole of the UK need to truly understand the ‘local level’. That is the level at which patients exist, where with the support of families, charities, neighbours, friends, carers and voluntary organisations and individuals strive and rally against their long-term conditions – some more successfully than others. Lived experience from this level has the potential to drive change in so many directions – socially, financially and medically – that it really must be the priority if the NHS is to meet the long-term needs, improve the quality of life for individuals and respond to existing and future financial constraints.

c) Reducing inequalities

Q6. Please provide any comments that you may have about the potential impact on equality and health inequalities which might arise as a result of the principles and process that we have described?

The NKF believe that the lives of all kidney patients are important, and while we recognise the importance of national priorities and the financial imperatives that influence priorities such as transplantation, we also recognise that for many patients with end stage renal failure dialysis is the only clinically suitable form of treatment. We therefore have a concern about the variance in priority of the two treatment modalities. NKF believes that more kidney patients should be offered the opportunity to dialyse at home. We also believe that more should be done to increase the number of kidney transplants (living donor and deceased donor transplants) so that we begin to reduce the number of patients who die while waiting for a transplant. Increasing home dialysis and transplants will have a major impact in reducing the overall funding spent by NHSE on kidney patients.

 

 

d) Other

Q7. Are there any other considerations that you think we should take into account when developing the principles and process for investing in specialised services?

The NKF respectfully ask that consideration is given to assessing ‘budgets’ over a longer period than just twelve months. We believe that it is widely considered to be a flawed practice and consideration should be given to extend the breadth of a financial period to five years which would allow greater opportunity for investment in terms of upfront costs in the initial twelve month period.

Consideration should be given to working with Devices 4 Dignity www.devicesfordignity.org.uk, part of NIHR, who have a specific remit for identifying devices that could lead to improving quality of service and quality of life, whether transplantation or dialysis services.

e) Service reviews

Q8. As well as hearing your views on which treatments and services NHS England should prioritise for investment, we are also keen to hear your views on NHS England’s rolling programme of service reviews on how specialised services are delivered.

The NKF requests clarification on how these principles will affect the four criteria used by PSSAG to recommend changes in how renal services are commissioned in the future. At present, in our view, there seems to be confusion within NHSE about what will happen in the future and kidney patients have already gone through a period of anxiety and fear as a result of the previous poorly managed consultation.