NHS England commissions dialysis services at a national level as a specialised service, setting out what providers should have in place to deliver dialysis care, including at home, as part of its remit to deliver specialised services. National Commissioning supports equity of access to high quality dialysis care. The service delivery contract sets out that the principle should be that home haemodialysis should always be an option for patients and that solutions should be sought to overcoming barriers that might prevent this. Decisions should be made on an individual basis but in general, patients suitable for home haemodialysis will be those who:

- have the ability and motivation to learn to carry out the process and the commitment to maintain treatment;

- are stable on dialysis;

- are free of complications and significant concomitant disease that would render home haemodialysis unsuitable or unsafe;

- have good functioning vascular access;

- have a carer who has (or carers who have) also made an informed decision to assist with the haemodialysis unless the individual is able to manage on his or her own; and

- have suitable space and facilities or an area that could be adapted within their home environment.

NHS England’s renal services specifications can be found at the following link:

www.england.nhs.uk/commissioning/spec-services/npc-crg/group-a/a06/

NHS England Specialised Services use the Renal Registry Annual Report and data to support work with local dialysis services so they are aware where variation exists so this can be considered and addressed.

The Atlas of variation, published by Public Health England in 2015, showed that for clinical commissioning groups (CCGs) in England, the percentage of dialysis patients who were receiving dialysis in the home (home haemodialysis and peritoneal dialysis combined) ranged from 4.1% to 44.0% (10.6-fold variation). When the seven CCGs with the highest percentages and the seven CCGs with the lowest percentages are excluded, the range is 7.6–33.7%, and the variation is 4.4-fold. Variation by parliamentary constituency is not available.

Reasons for the degree of variation observed include differences in:

- access to, and timely assessment by, a specialist kidney unit – working with patients to help them decide between treatments takes time, but in some areas 30% of patients are not known to their kidney team for even 90 days before they start renal replacement therapy;

- access to a multi-professional team, including staff who regularly support patients undertaking home dialysis; and

- levels of support for people undertaking home dialysis to help them maintain their independence, including access to respite in-centre dialysis.

The Atlas can be found at the following link:

https://fingertips.phe.org.uk/profile/atlas-of-variation

According to the latest data from the UK Renal Registry (UKRR), there were 1,195 patients receiving home dialysis in the United Kingdom in 2014, 1,175 patients in 2015; and 1,256 patients in 2016. The UKRR collects, analyses and reports on data from 71 adult and 13 paediatric renal centres. Participation is mandated in England, via the national services specification published by NHS England.

The latest report from the UK Renal Registry can be found at the following link:

www.renalreg.org/publications-reports/

No specific assessment of the cost to the National Health Service of the provision of dialysis services in a patient’s home compared to a clinical setting has been undertaken. In its assessment of the evidence regarding cost, the National Institute for Health and Care Excellence (NICE) set out in its guideline, ‘Renal Replacement Therapy and Conservative Management’, published in October 2018, that there is uncertainty in current UK dialysis costs, but they may be lower at home. The committee acknowledged that these treatments can have very different effects on lifestyle and recommended patient choice. The NICE guideline can be found at the following link:

www.nice.org.uk/guidance/ng107/resources/renal-replacement-therapy-and-conservative-management-pdf-66141542991301

Regarding the benefits of home dialysis, there is good evidence that home dialysis therapies offer advantages for suitable patients. The limitations of thrice weekly standard in-centre haemodialysis have been recognised in recent years. However, it is very difficult to separate the effect of different case mix, the most up to date and comprehensive data does not show a survival difference between patients who received more frequent versus thrice weekly (standard regimen) haemodialysis.

The advantage of self-care haemodialysis includes not only those related to control and convenience but also the opportunity to conduct more frequent or longer sessions to optimise health prospects. The introduction of smaller more portable haemodialysis machines also provides opportunity for travel for employment or holidays. Furthermore, these therapies are cost effective in the UK when compared with hospital treatments and have been demonstrated to be safe. Information regarding a reduction in travel times and reliance on other medicines is not available.

The Department has agreed that the 2019 Voluntary Scheme for Branded Medicines Pricing and Access will be subject to regular six-monthly reviews and a mid-scheme review with all parties to the agreement expected to attend.

The Department already produces quarterly reports on the operation of the voluntary and statutory schemes and this is set to continue. The relevant statutory scheme regulations require an annual review of the scheme, which will be made available to Parliament on an annual basis.

NHS England, together with the National Institute for Health and Care Excellence, is developing a ’commercial framework’ setting out the parameters for the commercial approach for medicines in the health service in England. This framework will be tested with and informed through consultation with stakeholders. In preparation for public consultation in the coming months, NHS England is actively engaging with industry trade bodies and health system partners, in the first instance, to progress the development of the commercial framework, as set out in the 2019 Voluntary Scheme for Branded Medicines Pricing and Access.

The information is unavailable in the format requested.

No assessment has been made. However, the explanatory memorandum of the amending Statutory Instrument acknowledges that protocols for therapeutic or generic equivalents will not be suitable for all medicines and patients. For example, such protocols would not be suitable for medicines that need to be prescribed by brand for clinical reasons, such as biological medicines. In these cases, patients would always be referred to the prescriber for any decision about their treatment before any therapeutic or generic alternative is supplied.

The Serious Shortage Protocol provisions in the Human Medicines (Amendment) Regulations 2019 enable Ministers, in exceptional circumstances, to issue a protocol that enables retail pharmacies to dispense in line with a protocol for a specific prescription only medicine rather than against a prescription, without going back to the prescriber.

Any protocol would need to set out what alternative quantity, pharmaceutical form, strength, therapeutic equivalent or generic equivalent can be supplied in what circumstances.

The National Institute for Health and Care Excellence (NICE) is in the process of planning how to conduct its scoping of the review of the methods for technology appraisal. Scoping will involve industry and other relevant stakeholders, including patient organisations, however, these details are still being planned. More information will be made available on the NICE website in due course.

A Serious Shortage Protocol is an additional tool to manage and mitigate medication shortages and may be used in the exceptional and rare situation when other measures have been exhausted or are likely to be ineffective.

As the explanatory memorandum of the amending Statutory Instrument acknowledges, protocols for therapeutic or generic equivalents will not be suitable for all medicines and patients. For example, such protocols would not be suitable for medicines that need to be prescribed by brand for clinical reasons, such as biological medicines. In these cases, patients would always be referred to the prescriber for any decision about their treatment before any therapeutic or generic alternative is supplied.

NHS England asked Sir Mike Richards to lead a review to improve the delivery of the screening programmes, increase uptake, learn the lessons from the recent issues around breast and cervical screening, and modernise and expand diagnostic capacity in England.

The independent review of cancer screening will include a ‘call for evidence’, however we understand from NHS England that there are no plans for a full public consultation.

The review will take account of views from partner organisations including charities and patient representative groups. Patients are also invited to engage with the review and patient groups will be consulted through engagement with partner organisations including charities and patient representative groups as part the ‘call for evidence’.

The review will assess current strengths and weaknesses in the current commissioning and delivery arrangements for the national cancer screening programmes, including breast cancer screening, in England and how best to maximise uptake across geographies and population groups.

NHS Digital has provided a count of finished admission episodes¹ (FAE) where primary diagnosis² was malnutrition³, by 10 year age bands for the years 2014-15 to 2017-18⁴. This information is provided in the following table.

Source: Hospital Episode Statistics (HES), NHS Digital

Notes:

¹FAE is the first period of admitted patient care under one consultant within one healthcare provider. FAEs are counted against the year or month in which the admission episode finishes. Admissions do not represent the number of patients, as a person may have more than one admission within the period.

²The primary diagnosis is the first of up to 20 diagnosis fields in the HES data set and provides the main reason why the patient was admitted to hospital.

³ICD-10 codes used to define malnutrition are:

E40 Kwashiorkor

E41 Nutritional marasmus

E42 Marasmic kwashiorkor

E43 Unspecified severe protein-energy malnutrition

E44 Protein-energy malnutrition of moderate and mild degree

E45 Retarded development following protein-energy malnutrition

E46 Unspecified protein-energy malnutrition

O25 Malnutrition in pregnancy

⁴HES figures are available from 1989-90 onwards. Changes to the figures over time need to be interpreted in the context of improvements in data quality and coverage (particularly in earlier years), improvements in coverage of independent sector activity (particularly from 2006-07) and changes in NHS practice. For example, apparent reductions in activity may be due to a number of procedures which may now be undertaken in outpatient settings and so no longer include in admitted patient HES data. Conversely, apparent increases in activity may be due to improved recording of diagnosis or procedure information.

NHS Digital has provided a count of finished discharge episodes¹ for in-hospital deaths² where the cause of death³ was malnutrition⁴, split by independent and National Health Service providers for the years 2008-09 to 2017-18⁵. This information is provided in the following table.

Source: Hospital Episode Statistics (HES) data linked to Office for National Statistics (ONS) death registrations data

Notes:

¹A finished discharge episode is the last episode during a hospital stay (a spell), where the patient is discharged from the hospital or transferred to another hospital. Discharges do not represent the number of patients, as a person may have more than one discharge from hospital within the period.

²HES records the circumstances under which a patient left hospital. For the majority of patients this is when they are discharged by the consultant and it is only recorded for the last episode in a spell.

³Cause of death has been obtained through linkage to ONS data. These data do not provide enough information to link the deaths to poor care. It is not possible to determine from these figures how or where the condition originated. There are many explanations as to why someone becomes malnourished: for example they may have cancer of the digestive tract, which means they can not eat properly or can not absorb nutrients; they may have suffered from a stroke or have advanced dementia which can cause difficulties chewing and swallowing; or they may abuse alcohol and so not eat properly. The deceased may have been malnourished before they went into hospital (for any of the reasons mentioned previously), and perhaps only have been in hospital a very short time and the malnutrition may have nothing to do with not being fed properly in hospital. Also, in the majority of deaths in hospitals from falls, it is likely the fall occurred elsewhere, not in the hospital. It is possible that poor care may have been a factor in some of the deaths, but ONS data does not provide enough evidence to draw this conclusion.

⁴ICD-10 Codes used to define malnutrition are:

E40 Kwashiorkor

E41 Nutritional marasmus

E42 Marasmic kwashiorkor

E43 Unspecified severe protein-energy malnutrition

E44 Protein-energy malnutrition of moderate and mild degree

E45 Retarded development following protein-energy malnutrition

E46 Unspecified protein-energy malnutrition

⁵HES figures are available from 1989-90 onwards. Changes to the figures over time need to be interpreted in the context of improvements in data quality and coverage (particularly in earlier years), improvements in coverage of independent sector activity (particularly from 2006-07) and changes in NHS practice. For example, apparent reductions in activity may be due to a number of procedures which may now be undertaken in outpatient settings and so no longer include in admitted patient HES data. Conversely, apparent increases in activity may be due to improved recording of diagnosis or procedure information.

It should be noted that HES include activity ending in the year in question and run from April to March, e.g. 2012-13 includes activity ending between 1 April 2012 and 31 March 2013.

Disclosure Control

In order to protect patient confidentiality '*' appears in the table above for all sub-national breakdowns, where it is possible to calculate a value between 1 and 7 from the data presented. All other sub-national data has been rounded to the nearest 5.

If the national total is between 1 and 7 (inclusive), no sub-national breakdown will be displayed.

If the national total is greater than or equal to 8;

a. Sub-national counts between 1 and 7 (inclusive) will be displayed as ’*’.

b. Zeroes will be unchanged.

c. All other counts will be rounded to the nearest 5.

To date, no decision has been taken to whether the right of every patient to have an online general practitioner consultation will be added to the NHS Constitution. The ultimate decision about what is included in the NHS Constitution rests with the Department and may be subject to parliamentary agreement.

To date, no estimate has been made. The proportion will depend on the preferences of patients and the extent to which existing providers of primary care take up the opportunity to offer online general practitioner consultations.

The following table presents the number of patients that have been removed from general practitioner (GP) practice lists in England and placed on a Special Allocation Scheme between 2016 and 2018. Data prior to April 2016 was not collected or held centrally.

Notes:

- 2018 includes data to November 2018.

- 2016 includes data from April to December 2016.

NHS England has a responsibility to ensure that all patients can access good quality GP services. The Special Allocation Scheme was created to ensure that patients who have been removed from a practice patient list can continue to access healthcare services at an alternative, specific GP practice.

This information is not held.

There is work underway to review the service specifications for children and young people with cancer. This will provide an opportunity to consider how some aspects of the patient pathway may be provided more locally to reduce the travel burden for patients and their families.

Currently the Healthcare Travel Costs Scheme which is part of the NHS Low Income Scheme allows for patients (and in certain circumstances their carers) to receive reimbursement of travel if they are in receipt of a qualifying benefit or on a low income. The NHS Low Income Scheme has helped 337,000 applicants to receive financial help with their National Health Service treatment.

The Healthcare Travel Costs Scheme is set up to assist those on low income or in receipt of certain qualifying benefits to obtain assistance with travel to hospitals.

Information on how to obtain assistance with travel costs is widely available from National Health Service organisations including general practitioner surgeries, hospitals, clinical commissioning groups and the NHS website. Outside of the NHS, information may also be obtained from Healthwatch, Citizen Advice, cancer and other charities.

We have made no assessment of the impact on patient safety of such a service. Where clinical commissioning groups have made local arrangements for how repeat medication is ordered we would expect it to take account of the General Medical Council’s Prescribing Guidance, so repeat prescriptions are safe and appropriate to patient need.

The Department and NHS England have not formally defined the term ‘seldom heard groups’, which is used by Greenwich Clinical Commissioning Group (CCG).

NHS England published statutory guidance for CCGs and NHS England on patient and public participation in commissioning health and care. A copy of this guidance can be found at the following link:

https://www.england.nhs.uk/participation/involvementguidance/

The CCG Improvement and Assessment Framework has an indicator (50) within the leadership domain that assesses CCGs involvement of patients and the public against a range of criteria including equalities and health inequalities. The indicator is based on the statutory guidance and so provides an assessment of CCG performance in this area. The 2017/18 data is available on MyNHS.

In May 2017 Greenwich Clinical Commissioning Group (CCG) carried out a review of the 35 general practitioner (GP) practices in the borough. This showed that 24 (68%) practices had fully functional Patient Participation Groups (PPGs).

In May 2018 Greenwich CCG undertook a further review which showed that 31 (88%) practices now had a fully functional PPG.

NHS England does not provide guidance about whether community groups can become PPGs. PPGs are specific to GP practices and included in the GP contract as a way in which practices can engage with their practice population. CCGs should engage more widely than PPGs and we would expect them to connect with and engage with community and voluntary groups in their local communities. This is part of their duty to involve patients and the public and is covered in the guidance for CCGs last published in 2017. Greenwich CCG welcomes engagement opportunities with patient community groups to receive feedback on health services commissioned by the CCG. This would be outside of the formal remit of a Patient Participation Group as defined within national guidance.

In May 2017 Greenwich Clinical Commissioning Group (CCG) carried out a review of the 35 general practitioner (GP) practices in the borough. This showed that 24 (68%) practices had fully functional Patient Participation Groups (PPGs).

In May 2018 Greenwich CCG undertook a further review which showed that 31 (88%) practices now had a fully functional PPG.

NHS England does not provide guidance about whether community groups can become PPGs. PPGs are specific to GP practices and included in the GP contract as a way in which practices can engage with their practice population. CCGs should engage more widely than PPGs and we would expect them to connect with and engage with community and voluntary groups in their local communities. This is part of their duty to involve patients and the public and is covered in the guidance for CCGs last published in 2017. Greenwich CCG welcomes engagement opportunities with patient community groups to receive feedback on health services commissioned by the CCG. This would be outside of the formal remit of a Patient Participation Group as defined within national guidance.