The proposed changes outlined to the NHS Constitution cover:
- the changes recommended by Sir Robert Francis QC, in his Inquiry Report following the terrible failings at Mid-Staffordshire NHS Foundation Trust;
- giving greater prominence to mental health;
- weaving in some of the new Fundamental Standards;
- making reference to a more transparent and accountable NHS; and
- making reference to the Armed Forces Covenant.
Question 2: A patient-centred NHS [Recommendation 4]
We would like to change the current wording to: ‘Patients will be at the heart of everything the NHS does’ (Annex 2, Change 2). Do you agree?
The UTA strongly agrees with the notion that patients should be at the heart of the NHS, but believes that the NHS must ensure that organisations across the NHS reflect this commitment in their day-to-day work. There have been some occasions were the drive for savings has superseded the importance of patient choice.
In particular, the UTA has become increasingly concerned about arrangements made by some clinical commissioning groups, notably the introduction of local product formularies, which restrict patient and prescriber choice in the selection of urology appliances. Local formularies involve narrowing down the range of products approved for use at a national level into a reduced set of products for prescribers to recommend to patients.
In urology care, the range and choice of appliances and associated care items that are available for prescription on the NHS is governed by the Drug Tariff – a comprehensive list of products which have been assessed and approved a national level as clinically effective and cost effective – which also acts as a reimbursement framework for NHS providers
Each patient using urology products has individual needs; product differences, which may seem tiny to healthcare professionals, may not be so insignificant to the patient who has to use the products. An individual’s quality of life and clinical needs must be taken into account and patients must receive the most appropriate products for them in the long term. It must be fully understood and accepted that this may not be cheapest product; NHS bodies need to recognise the full lifetime and wider societal benefits of medical devices.
As such, whilst we appreciate that there are significant budgetary pressures on the NHS, it is essential that NHS England do its utmost to ensure that this particular focus of the NHS Constitution is carried out in a uniform way across the country. The outcome will not only be a better patient experience overall, but the realisation of the Department of Health’s ambition of long-term financial savings. For example, a report by Frontier Economics, quoted by Health Secretary Jeremy Hunt in October 2014, referenced Health and Social Care Information statistics that stated that said that the cost of catheter-acquired urinary tract infections across all health care settings was £67 million in 2013 to 2014. Commissioners should consider the long-term costs of increased infections as well as the short-term costs of prescribing a wider range of products to patients.
Question 7: Fundamental standards [Recommendation 13]
We would like to include the following wording for patients:
- ‘You have the right to receive care and treatment that is appropriate for you, meets your needs and reflects your preferences.’ (Annex B, Change 4)
- ‘You have the right to be cared for in a clean, safe, secure and suitable environment.’ (Annex B, Change 5)
- ‘You have the right to receive suitable and nutritious food and hydration to sustain good health and wellbeing.’ (Annex B, Change 6)
- ‘You have the right to be protected from abuse, neglect, and care that is degrading.’ (Annex B, Change 8)
- ‘You have the right to be involved in planning and making decisions about your health and care with your care provider, including your end of life care, and to be given information to enable you to do this. Where appropriate this right includes your family and carers. This includes being given the chance to manage your own care and treatment.’ (Annex B, Change 10). Do you agree?
Immediately preceding change 4, the following wording should be added: ‘You have the right to be made aware of all the care and treatment options to which you are entitled’.
Patients should be made aware of all the care and treatment options to which they are entitled. While we agree that there should be a right to appropriate care and treatments, this will not work effectively unless people are also made aware of the care and treatment options to which they are entitled, to allow them to make an informed decision about their care. Under Part IX of the Drug Tariff, patients with bladder problems have a right to access urology products that have been approved by the Secretary of State for Health following a rigorous assessment process. The wide range of products available under the Part IX of the Drug Tariff allow for patients with individual needs to choose products that best suit them.
Despite this, various clinical commissioning groups have introduced local product formularies, or attempted to introduce off-script supply. These local arrangements restrict patient choice through limiting patient access to products. While in principle, a patient should continue to be able to access any product on the Drug Tariff, in practice choice ends up being restricted, both through reduced knowledge of the available products and because CCGs can be reluctant to allow off-formulary products.
Appropriate medical devices are hugely important to people in ensuring their quality of life and independence are maintained, and that they can manage medical problems with dignity. If patients receive products that do not meet their individual needs – such as dexterity problems, for example – it can lead to increased product wastage as well as increased urinary tract infections, which inflict costs on the health system. A patient’s individual needs can affect how they are able to use different types of devices, including catheters, even when the differences seem minor to health care professionals – affecting healthcare outcomes and their daily lives.
Along with change 6, the following text should be added: ‘You have the right to have your continence needs attended to in a manner which ensures your health and dignity’.
The UTA believes that, in addition to food and hygiene requirements being met, patients should also have the right to have their continence needs attended to, and that this should be explicitly outlined in the constitution. The issue of poor continence care is something that the Government has been made aware of on many occasions, but has not taken adequate measures to tackle. In the Francis Report, which followed the Mid-Staffordshire scandal, 22 of the 35 case studies related to poor continence care, whereas the 2013 report by All Party Parliamentary Group on Continence Care also highlighted the issue.
The Care Quality Commission has recently recognised the need to ensure that continence needs are attended to; this has been reflected in their final guidance for all CQC registered healthcare providers on the fundamental standards of care. Under Regulation 13 of the guidance, it is stated that providers must take reasonable steps to ensure that those who use services are not subject to degrading treatment, such as not providing help and aids so that people can be supported to attend their continence needs. Prior to consultation, the standards recognised nutrition and hydration needs, but not continence needs. It is important that the NHS Constitution be amended to provide consistency with the new guidance.
Change 10 should be amended as follows: ‘You have the right to be involved in planning and making decisions about your health and care with your provider, including your end of life care, and to be given information based on national guidelines, to enable you to do this. Where appropriate this right includes your family and carers. This includes being given the chance to manage your own care and treatment. The information provided must conform to national guidelines’.
The UTA would like to emphasise that the information and assistance given to help patients and their families/carers make a decision must conform to national guidelines in order to ensure better uniformity in the provision and quality of services across the country.
We believe by amending the text, will help ensure that patients across the country are aware of Part IX of the Drug Tariff, and the products that are available on it. As we have already explained, patients, particularly those with mobility and dexterity issues, will achieve better outcomes if they can access the products that suit their individual needs. Patients who use inappropriate products not only have a harder time managing their condition, which subsequently affects their esteem, but are also at risk of urinary tract infections. A study by Frontier Economics, which was quoted by Health Secretary Jeremy Hunt in a speech at Birmingham Children’s Hospital in October 2014, referenced Health and Social Care Information statistics that said that the cost of catheter-acquired urinary tract infections across all healthcare settings was £67 million in 2013 to 2014.