Updated: Mar 23, 2021
The National Pensioners Convention responsed to the NHS England Consultation of
Integrated Care Services which can be read or downloaded below.
NHS England and NHS Improvement
80 London Road
07 January 2021
NPC Evidence for the Response to the
NHS England Consultation of Integrated Care Services
The National Pensioners’ Convention (NPC) is Britain’s biggest independent organisation for older people, representing around one thousand local, regional, and national pensioner groups with a total of 1.2 million members. The NPC is run by and for pensioners and campaigns for improvements to the income, health and welfare of both today’s and tomorrow’s pensioners. We believe that every pensioner has the right to choice, dignity, independence, and security as an integral and valued member of society and this response is based on the views and experiences of our members and our Health & Social Care Working Party. We therefore wish to submit the following views to the NHS England Consultation of Integrated Care Services.
Whilst COVID has changed life for everyone, the impact on older people has been greater than any other age group in terms of the devastating number of deaths (two-thirds of all those recorded), isolation and loneliness. The care system will not be fixed by moving to an integrated service that is badly funded and subject to political decisions that ration health and care services.
Health and care services are two essential but disparate parts of a need to deal with the health of the nation that provides equal access to quality health and care. The NHS and care are funded differently – the NHS from public money (with increasing outsourcing) and care from a conglomerate of commissioning, public/private providers and self-funders with means-testing at the centre.
The NPC is committed to a National Care Service, free at the point of need, funded by taxation, publicly delivered and accountable. ‘Goodbye Cinderella – A New Settlement for Care’ has been published and widely acclaimed as a blueprint for care services across the generations.
Current government offers nothing but more of the same disguised as ‘new thinking’. Care needs radical reform with a long term, sustainable funding route that ensures every citizen has the care they need when they need it and are not judged on their social and economic status.
The NHS is subject to ‘creeping privatisation’ through contracting out services. Currently there is no up to date data on contracts being given to private companies, either because data is not being collected during the pandemic or contracts have not been registered (a common occurrence). Since 2015, £23.9 billion has been given in contracts with 61% being to private companies.
In response to COVID, £21.1billion has been given in contracts awarded to private companies for the supply of PPE and other equipment. Some deliveries have still to materialise, others delivered ineffective equipment. There is no accountability for the expenditure of public funds.
The NPC along with other national organisations is demanding an enquiry into this issue, along with the lack of human rights in care homes, the devastating deaths and lack of support for carers, families and those in most need.
Principles of the consultation:
The NPC understands the role that ‘integration’ can play in delivering quality health and care services, but the experience on the ground so far is sadly mismatched to the claims in the consultation document.
In reality, we have seen:
· Between 1987/88 and 2019/20, the total number of NHS hospital beds in England fell by 53 per cent – from 299,4000 to 141,000. https://www.kingsfund.org.uk/publications/nhs-hospital-bed-numbers#hospital-beds-in-england-and-abroad
· Closure of A&E departments, Stroke Units, Maternity Units and other significant services in the NHS.
· Removal of services to ‘hubs’ that are not exactly accessible to those without transport (personal or public)
· Loss of ‘support services’ either to private providers or just not there anymore. The NPC ‘Goodbye Cinderella’ advocates preventative services being widely available to enable individuals and their carers to maintain their independence, health and well-being and social inclusion wherever they are.
There is no data provided in your document as proof of the ‘success’ of ICS projects. This must be provided before any further actions are taken. It would be remiss of NHS England to imagine that given the above list of ‘on the ground’ failures, that giving ICS legal standing will dramatically change delivery.
In our opinion, the consultation document lacks perspective, has no data to show outcomes either positive or negative and is, in effect, a meaningless exercise.
The NHS Long Term Plan:
The NHS Long Term Plan has scant mention of care – either its funding or delivery model. To date, the plan has not produced an increase in GP’s or nurses with a vast number of vacancies in both of those career paths.
Under the previous heading ‘Principles of the Consultation’ and our case studies at the end of this submission, it can be clearly seen that NHS England’s drive towards what it describes as ‘local level services’ is painfully at odds with the need and delivery on the ground.
The consultation document does not give a clearly defined role to Local Authorities. It is therefore very possible that Local Authorities will find themselves marginalised along with GP’s, with a very diluted role. Test, Track & Trace is only one example of where the local knowledge of communities within Local Authorities would deliver much better outcomes and more value for money than Serco.
If nothing else, COVID has shown that public services are needed more and more by those people disenfranchised from accessing privately provided or poorly funded services that by omission have a negative impact on the health of the nation as a whole.
There is a need to fully fund our NHS, a National Care Service and Local Government with ‘joined up’ services; parity of illness and impairment and preventative services delivered and accountable by public bodies. This removes the motivation for profit being made from those in need.
Commissioning models are important to making sure that communities have the services they need from providers, whether these are provided in-house by the NHS, Local Authorities, or by private or voluntary sector organisations. However, commissioning models based on purely cutting budgets are not those giving the best outcomes.
Local Authorities have a key role in understanding and delivering local services but replacement funding must be available for such services to be able to be equally accessible to communities.
If there is to be a genuine cessation of the competitive market purchaser/provider split in the NHS, repealing selective sections of the 2012 Act will not achieve this. A better solution would be to replace the Act with the Reinstatement of the NHS Bill along with the return of accountability for the Secretary of State for Health & Social Care.
The likely outcome of selectively repealing parts of the 2012 Act will be more privatisation without the monitoring and accountability functions – something already happening in most local areas in England.
It is the case and always has been that ICS contracts can (and are) given to private providers. Better use of public funding is for contracts to be awarded to public sector organisations (i.e. local authorities or health boards) or other not for profit providers, and limited to UK organisations.
The NPC is aware of the change in language but that the structure and method of delivery are one and the same. Changing language is a very covert way of dealing with the challenges from local campaign groups, Trade Unions and organisations like the NPC and indeed the perception of the public at large.
Driving the use of data and digital processes as a way of improving outcomes excludes those without access to technology. In the over 65 age group, 67% do not have access to technology. The research carried out by the NPC Digital Inclusion/Exclusion Working Party shows that the older a person is, the less likely they
are to be engaged with computers, broadband and other forms of digital equipment. Therefore, using only this method gives a false outcome as any individual unable to participate is not included in the numbers of any given area of health service delivery. By default, funding is given on inaccurate data and discrimination against older people and others without access to technology prevails without justification.
The NPC urges you to:
a) Produce the data you claim shows an improvement in health outcomes
b) Identify exclusion of older people and others without technology
c) Plan for alternative easy access for those who wish it.
It is a well-known fact that technology providers are private companies with lucrative income from the taxpayer without the accountability when things go wrong. The sharing of health records has raised concerns from many of our members, particularly around who has the right to place recordings on an individual health record, and the use of the words ‘frail’ and ‘vulnerable’ that have connotations for that person’s receipt of ongoing health services.
Most CCG’s meet in secret with no accountability to the patient population in the catchment area. This is unacceptable since CCG’s are mainly funded through taxpayer’s money but with some generating income from large pharmaceuticals. There is no evidence that ICS’s will be open and transparent – demonstrated by the case studies at the end of this submission.
Under the cover of COVID, services have been moved, removed, or reconfigured without consultation with the local councils, local health providers and other stakeholders.
The demise of CCG’s under the ICS proposals just means more power to decide – not more power to provide what is actually needed. In the backdrop of more austerity measures as a result of COVID, the NPC has no hesitation in predicting that although there will be more need, there will be less funding and therefore ICS’s become the rationing body that CCG’s once were.
The UK Internal Market Bill making its way through parliament will change procurement law and if, as suspected, it comes with the deregulation of the NHS market, then the privatisation of the NHS moves swiftly on.
In effect, far from being a ‘national’ service, the 42 ICS will perpetuate fragmentation of services and post code lotteries will increase in number as there appears to be no actual framework in the consultation document that ensures equality of delivery and access.
End of Life Care:
The ‘new’ NHS Pathway as a substitute for the Liverpool Pathway is deceiving the public. With less funding to spend, the clear pathway for older people has already been set in some parts of England. With older people being issued with blanket Do Not Resuscitate (DNR) Orders at the beginning of COVID, without the opportunity for in depth conversations, explanations and consequences to be held with those concerned and their families, is a direct violation of human rights and must never happen again. But it is happening as our case study section shows. There appears to be no room for a ‘natural death’.
Language is important here. Medical staff continue to use the outdated DNR, but moving to Do Not Attempt Resuscitation (DNAR) is much clearer as it reduces the implication that resuscitation is likely. It creates a better emotional environment in which to explain what the order means. Allow Natural Death (AND) is clearer still.
No matter the system, what is clear is that the NHS new Pathway must be scrutinised on how it communicates to individuals what they are signing up to. It must also ensure individual human rights are protected with no coercion to sign as a key element of those human rights.
NHS England must make sure that human rights are properly considered and delivered with any health and care services under its umbrella.
The charter with which the NPC was originally convened over 40 years ago has in its wording: ‘every pensioner has the right to choice, dignity, independence and security as an integral and valued member of society.’
Because our ‘Goodbye Cinderella’ policy is a blueprint for all generations, then we would expect that this covers every single citizen in England and must be delivered by NHS England, ICS’s and any other form of public or private provider.
NHS England would do well to look at how Wales delivers a predominantly publicly owned, publicly delivered and accountable health and care service. Their method is based on making decisions about what the population needs and how to deliver it within the funding available. Conversely in England, decisions are made on how many cuts have to be made or privatising services to match the funding.
There is a history of ‘joined up’ services having been successful in the past only for them to be swept away by legislation by one government or another. It is not beyond the realm of understanding that history can (and does) influence the future and the NPC wonders why those successes were met with such negativity.
We strongly disagree with giving ICS’s legal status. It has the potential to over-ride other local voices (‘in the name of the law’) and lead to more services being lost or re-modelled.
De-skilling GP’s (which is part of your document) and the ensuing loss of clinical care and support to patients allows ICS’s to restructure or remove services without recourse. Once in place, the damage to locally provided services and the population at large cannot be undone without protracted judicial reviews.
Furthermore, the NPC asks the question as to whether ICS’s will be seen as public bodies. They should since they will be funded by and use public money for providing local services. In that respect then, the law would require them as a public body to carry out Equality Impact Assessments every time they want to re-configure a service. They will be bound by the Equality 2010 Act in terms of goods and services and the Human Rights Act. Our understanding of the current operation of ICS’s is they do not currently work that way.
We also strongly disagree that NHS England should abdicate its responsibilities to ICS’s. NHS England is itself the largest quango in the world, and by moving part or all of its current arrangements to ICS’s will, in effect, create 42 quangos that have the capacity to do as they want, not what is needed for the nation.
The NPC believes the way forward is: · Full public ownership of health and care services, free at the point of need
· Full public consultation on changes to health and care services
· Contracts to be awarded to public sector organisations (i.e. local authorities or health boards) or other not for profit providers, and limited to UK organisations.
· A local Track, Test, Trace, Isolate, and Support system that works for everyone
· A COVID vaccination programme that does not mean reductions to other NHS, GP or social care services
Whilst you may view this submission as a negative one, the NPC does indeed want to see change in both the NHS and care services in England. We believe that changes must be user-led, and whilst your document purports this is the case, our case studies tell us otherwise. There is therefore a gap between the dialogue in the document and the reality experienced by our members and their families.
The fact that informal carers (i.e. families and friends), save the government over £150 billion a year by looking after those in need, shows how broken, unequal and unfit for purpose our systems are in England.
Ageism is alive and well in England and in the health/care profession. Labelling older people as ‘vulnerable’ and/or ‘frail’ is ageist and therefore NHS England must change the narrative around older people, their health/care needs and how they are perceived as individuals.
If the measure of a civilised country is how it treats its most vulnerable citizens, we are in extreme danger of becoming uncivilised in England.
We are most happy to talk through with you any of the comments made in this submission. Please contact us through email@example.com
1. A 95-year old lady received a letter in the post from her GP to ask her to sign what she was given to understand was an update of her records. It was in fact a DNR letter. Luckily, this lady contacted her family who immediately contacted the GP. The lady was so upset as she has trusted her GP for many years, but has now changed surgeries. Needless to say, the letter was not signed and she is now very much aware of the consequences had she signed without looking into it further.
Whilst the NPC understands the complexities and dangers of resuscitation of elderly patients with complex needs, the process must be properly undertaken involving the patient, family, carers and an advocate if necessary where there are no family members. Ensuring that everyone involved understands what signing a DNR means to the individual is paramount. Over-riding human rights is completely unacceptable.
2. Some GP surgeries are using specific telephone equipment that charges anything from 20p to 50p per minute. There are examples of patients calling their GP on these phones and waiting in a long queue of people. The costs of these phone calls soon become prohibitive to those on low and fixed incomes.
3. A 91-year old lady who lives alone fell in her home and hurt her foot/ankle. She telephoned her GP and was told to take a photograph of her foot/ankle and email it to the surgery. This lady had no way of being able to do that as she has no computer.
4. A 93-year old lady who lives in her own flat with carers visiting three times a day. There have been ongoing issues with those carers. Her daughter took her to hospital because she was in severe pain. They were there for 9 hours before being discharged. She was told she had cysts on her kidneys and was still in severe pain. Her daughter took her a second time to the hospital, waited another 9 hours and was discharged with pain killers and Movicol.
Still unwell, the lady went to hospital by herself for the third time and was kept in for one week. COVID had already reached the UK then. From 4 March, the lady stayed with her daughter as the carers left her in great pain; not calling doctors or an ambulance.
The following day she collapsed and paramedics were called. She was taken back to hospital, kept for 25 hours and then discharged at 2.30 in the morning. She had been on oxygen and should not have been discharged.
Exhibiting signs of COVID, she was hospitalised again. The daughter received three phone calls during her mother’s hospitalisation being told that if she didn’t take her mother back home, they (the hospital) would put her in a care home. The daughter threatened to report them if they did that. The hospital also failed to inform the daughter that her mother had tested positive for COVID.
On 17 April the lady deteriorated and the daughter asked to be able to sit with her mother and was refused. The following day, the hospital informed the daughter that her mother was fading fast. It took 20 minutes to get to the hospital for the daughter to be told her mother had died 4 minutes earlier. She was allowed to sit with her on a COVID ward wearing a mask. The ward was full and there was no patient on oxygen and no evidence of oxygen next to her mother’s bed. Her death is recorded as COVID and pneumonia.
5. Repeat Prescriptions: The NPC wrote to NHS England and the Royal College of GP’s in regard to an article that suggested GP’s were being told that repeat prescriptions could only be ordered online. We received a swift response from NHS England stating that GP’s have been told to have alternative methods for ordering repeat prescriptions. Whilst this has been helpful, it is not always the case across the country.
6. The use of the words ‘frail’ and ‘vulnerable’ have been seen on medical records without explanation. This is ageist language and has the potential to affect ongoing access to medical treatment.
7. North Central London: A number of concerns raised by members:
· Enfield Older Person’s Assessment Unit moved without notice from Chase Farm Hospital to Barnet Hospital making it less accessible to older people.
· Paediatric Emergency Care moved from University College Hospital and the Royal Free to Whittington. Only made public after the move had taken place.
· ‘e-consult’ appeared with a week’s notice. Contacting GP means filling in a long online questionnaire.
· GP consultations have become ‘remote’ either by telephone or video (if you have the equipment).
8. An unannounced visit was the first time a 93-year old lady had any inclination that the NHS had a plan for her life. She was visited by a ‘Frailty Practitioner’ from a nearby hospital without any prior warning or appointment. During this visit, the practitioner talked about her ability to walk, memory recall and other areas of her health.
At 93, she has some ailments common to her age, but walks every day, plays with her grandchildren when they visit, knits, can recall anything from WW2, through to yesterday and plans for the future.
Imagine her distress when she received through the post an A4 poster that was to be displayed in her home. This was in effect a DNR order saying she would not be resuscitated should her heart stop. Even by NHS standards she was judged to be above the level for frailty, yet still treated as such.
No prior contact, no appointment, no explanation, no physical tests applied, no understanding given of what was to follow.
9. Getting to hospital/doctor or other appointments is becoming more difficult as there is no integrated transport links to location – particularly those outlying services. Such is the fragmentation of delivery that many older people in particular find it a struggle to meet appointment dates and times. On a day when someone is not feeling well, it is usually a deciding factor as to whether that person travels or not with all the stress, time and effort required.
These examples are just a small demonstration of the reality older people face in daily life.