Petition: Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings

I am not up to re reading the new NICE ME/CFS guidelines at present, but wonder if the Hospital Trust’s refusal to provide any nutritional support, either inpatient or domiciliary, unless Karen agrees to admission to a multi patient ward and without her main carer being allowed 24 hour access, is incompatible with the current ME/CFS Guidelines.

Access to a separate room would seem to be a minimum requirement for someone with very severe ME when in hospital and given the complexity of the case allowing their main carer to be present 24 hours would seem only rational.

As discussed here in other threads there are a hierarchy of options, including IV, nasogastric tube, entral feeding or a central line that should be considered where oral feeding is restricted, regardless of the causes/origins of the feeding problems. These can be an alternative or a supplement to continued oral feeding. Death from dehydration and/or malnutrition is a profoundly distressing way to die, and there is no excuse for not trying the readily available alternatives in twenty first century Britain, because a Hospital Trust refuses to provide the basic accommodations that should be available to anyone with very severe ME.

This apparent situation appears to be not only incompatible with the NICE guidelines, but also unlawful in terms of disabled access to services. I wanted to post here before commenting on the petition itself so others could comment on the accuracy of my statements.
 
Peter Trewhitt said:
Access to a separate room would seem to be a minimum requirement for someone with very severe ME when in hospital and given the complexity of the case allowing their main carer to be present 24 hours would seem only rational.
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Absolutely, there is no reason whatsoever for the trust to deny her these lifesaving accommodations. It is wilful ignorance and cruelty.

All hospitals (as far as I’ve been to), have side rooms available for special cases - infections, or other people who would have extreme distress if put on the ward eg with autism, sensory or learning difficulties (and of course ME). And once you’re in a side room, it’s extremely easy to have a parent/carer with you, as there’s plenty of room for the carer to stay and they won’t be disturbing anyone or getting in the way (and other patients won’t ask why a carer has been allowed to stay).

Besides this, the NICE guidelines now say that people with severe/very severe ME should be offered a side room and talks about the importance of carers as well. These accommodations literally allow people to access lifesaving care.

There’s also no reason why she should be forced to go all the way to St Marks (who are denying these accommodations)? Besides the fact that people I know have had terrible experiences in that hospital… but this girl already was given TPN at her local hospital so why can’t they start it again there and allow her to take it home? St Marks is a specialist bowel hospital but she doesn’t need to go there to start TPN! It just sounds like the local hospital don’t want to take responsibility for her.

This whole situation is horrific, she is suffering so much and must be terrified. I feel so angry that nothing ever seems to change in the NHS.

(I know she’s probably already done this… but has she involved the charities & her MP? I found when I got Action for ME & my MP involved, hospitals got more scared. Or if there are other hospitals in the area and she’s able to go to them instead.. I don’t know if they will help?)
 
I can't find anything on St Mark's website that says why they want such an assessment period, other than them apparently being the main centre with the most expertise for such treatment in the area? How is that helpful if the patient cannot safely go there..? One of the first things for us to consider with nutrition is the environment the patient is in, to see if that can be improved to help digestion. Putting someone with severe ME in a bay without their carer would go against this as it would worsen the ME (just pointing out it is wrong also from the nutrition perspective, in addition to all other reasons already mentioned).

European Society for Clinical Nutrition and Metabolism (ESPEN) have guidelines for home parenteral nutrition, it was updated in 2023 and can be found near the top of their guidelines pages: https://www.espen.org/guidelines-home/espen-guidelines.

One way to cut hospital stay for patients were a long stay may not be the best is to provide training at home. There is also a table showing what types of assessments must be done to monitor the health of the patient.
 
Peter Trewhitt said:
I am not up to re reading the new NICE ME/CFS guidelines at present, but wonder if the Hospital Trust’s refusal to provide any nutritional support, either inpatient or domiciliary, unless Karen agrees to admission to a multi patient ward and without her main carer being allowed 24 hour access, is incompatible with the current ME/CFS Guidelines.
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I am reasonably certain that it is.

More generally, I doubt that it is either ethical legal to deny one treatment if patient declines some other form of treatment, unless there is a psychiatric section order in place. It would be a clear breach of the patient's rights to autonomy.
 
The NHS service prioritisation is a mystery to me. I knew an elderly lady in her 90's who was fitted with a G-tube (due to swallowing problems) and provided with all the equipment and regular 'food' and replacement tube supplies etc for years at her home all for free and without any kind of proviso.
 
Sly Saint said:
The NHS service prioritisation is a mystery to me. I knew an elderly lady in her 90's who was fitted with a G-tube (due to swallowing problems) and provided with all the equipment and regular 'food' and replacement tube supplies etc for years at her home all for free and without any kind of proviso.
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I think the difference there will be, she got lucky and got a dr/team who cared about her welfare and best interests. No guarantee of this whatever your age, remember Liverpool pathway. No one should be denied treatment at any age. However in getting to 90 this lady had proven herself a capable human, in organisational view, by staying alive that long and not needing a tube ‘in her prime’. The medical profession expects illness in older people, because bodies eventually breakdown not in younger people, because newer bodies don’t breakdown without specific conditions and triggers. The medical profession has been taught to see people with ME as malingering, or exaggerating. Then too often treats accordingly. It’s pure prejudice.

I really hope the embarrassment of public notice for this hospital forces a change very soon for Karen’s benefit.

Edit: additions inserted for clarity.
 
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Sly Saint said:
The NHS service prioritisation is a mystery to me. I knew an elderly lady in her 90's who was fitted with a G-tube (due to swallowing problems) and provided with all the equipment and regular 'food' and replacement tube supplies etc for years at her home all for free and without any kind of proviso.
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There’s no cure for whatever is ailing the 90 yo lady, and it’s not considered a self-inflicted issue, so they treat with compassion. Whereas with ME/CFS, they think they know that the cure to malnutrition is graded eating therapy.
 
I wonder if the following few posts with info taken from the Handbook of the NHS Constitution could be of any help to Karen and her family?

If someone has contact with them then maybe, if you think this info could be of help, you could send it on to them.

The NHS Constitution lists various legal rights applicable to all patients. The next few posts are some of these rights which I thought could be relevant and the legal basis of the rights.

All these rights are found at this link. Posting them individually to make it easier to read:

https://www.gov.uk/government/publi...-handbook-to-the-nhs-constitution-for-england

Right: ‘You have the right to receive care and treatment that is appropriate to you, meets your needs and reflects your preferences.’

Your care and treatment needs and preferences should be assessed by people with the required levels of skill and knowledge for the task, and met where possible.

This right should ensure that your care and treatment is well planned and that you are treated as an individual. The plans for your care and treatment should be reviewed regularly and whenever necessary, for example when you transfer between services.

There may be times when your needs and preferences cannot be met for some reason. In these instances, providers must explain the impact of this to you, and explore alternatives so that you can make informed decisions about your care and treatment.

Source of the right

This right reflects the fundamental standard about person-centred care, which is set out in regulation 9 of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014.

The purpose of the 'person-centred care' fundamental standard is to ensure that providers of health and adult social care services plan and provide patient care and treatment that is appropriate, meets their needs, and reflecting their preferences.
 
Rights and pledges covering quality of care and environment

Right: ‘You have the right to be treated with a professional standard of care, by appropriately qualified and experienced staff, in a properly approved or registered organisation that meets required levels of safety and quality.’
NHS staff must treat you with reasonable care (this will be determined by the health professional's practice) in your treatment or when providing other healthcare. The staff who provide NHS services must be appropriately qualified and have the experience needed to do their jobs well. Where appropriate they are governed by professional bodies and/or regulators.

As well as taking reasonable care to ensure a safe system of healthcare and using suitably qualified and experienced staff, NHS and private organisations must register with the CQC when providing a regulated activity as set out in the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014, and ensure they are meeting essential safety and quality standards on an on-going basis.

Source of the right
The law of negligence imposes a duty of care on providers of healthcare. This is a duty to take reasonable care and skill in the provision of treatment or other healthcare. For a health professional, what constitutes 'reasonable care and skill' will be determined by reference to professional practice. In the case of an NHS body or private organisation, it must take reasonable care to ensure a safe system of healthcare – using appropriately qualified and experienced staff.

If a provider breaches the duty and as a result causes injury to a patient, the patient can claim damages to compensate for the injury and resulting financial loss.

Regulations under the NHS Act 2006 governing the provision of GP and most other primary care services require practitioners to exercise reasonable care and skill in the delivery of obligations under their contracts.

Individual health professionals are also governed by the standards set under the professional regulatory regime that applies to their profession.

Under the Health and Social Care Act 2008 persons who carry out regulated activities in England, including NHS and private and voluntary providers, have to register with the CQC and meet these essential requirements of safety and quality.

This right is also based on the fundamental standards in regulation 12 (safe care and treatment) and regulation 19 (fit and proper persons employed) of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014.

The CQC's role is to encourage service providers to improve care by regulating and inspecting services. The CQC ensures that only persons who have made a legal declaration that they meet the essential fundamental standards are allowed to carry out regulated activities. The CQC actively works as part of the wider system to detect and address failing organisations, sharing its findings with other regulators, including NHS Improvement, and the commissioners of services.
 
Right: ‘You have the right to receive suitable and nutritious food and hydration to sustain good health and wellbeing.’

Where you are provided with accommodation or an overnight stay as part of your care or treatment, or where you receive nutrition and hydration as part of your care and treatment, your nutrition and hydration needs must be met. You should receive suitable nutrition and hydration appropriate to your individual needs, whether nutritionally well or nutritionally vulnerable, and your needs must be regularly reviewed. Patients should be screened for malnutrition in order to inform their individual plan of care.

Nutrition and hydration can range from food and drink provided by the catering service, to specialist nutritional interventions administered by clinical staff. Dietary requirements should be reasonably met, whether specific or unusual to an organisation's general population, for example cultural or religious.

In order for patients to receive appropriate nutrition and hydration, it is important that unnecessary activity is ceased to protect mealtimes. Those who require assistance to eat and drink should receive appropriate support, including encouraging involvement of family members/carers where possible.

Source of the right
This right is based on the fundamental standard about nutrition and hydration, which is set out in regulation 14, and standards relating to person-centred care and good governance in regulations 9 and 17 of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014.

The nutrition and hydration fundamental standard requires providers registered with CQC to ensure that the patient's needs for food and drink are met, that they are given suitable and nutritious food (or other sources of nutrition where needed) and are given any support they may need to eat or drink. The standard also requires providers to meet any reasonable requirements for food and drink arising from their preferences or religious or cultural background.

NHS organisations are expected to meet any hospital food standards identified in the NHS Standard Contract covering patient nutrition and hydration, healthier eating for the whole hospital community and sustainable food and catering services.
 
Rights and pledges covering nationally approved treatments, drugs and programmes

Right: ‘You have the right to drugs and treatments that have been recommended by NICE for use in the NHS, if your doctor says they are clinically appropriate for you.’

Source of the right
Regulations 7 and 8 of the National Institute for Health and Care Excellence (Constitution and Functions) and the Health and Social Care Information Centre (Functions) Regulations 2013 require compliance with NICE technology appraisal recommendations and highly specialised technology recommendations.
 
Right: ‘You have the right to be treated with dignity and respect, in accordance with your human rights.’

The right to dignity includes a right not to be subjected to inhuman or degrading treatment. The right to respect includes the right to respect for private and family life.

This right has broad meaning, but for the NHS your care, where possible, should be provided in a way that enables you to be treated with dignity and respect.

Where appropriate your health professional must also follow the standards set by their own professional body and/or regulator.

Source of the right
The right to be treated with dignity and respect is derived from the rights conferred by the European Convention on Human Rights (ECHR) as given effect in UK law by the Human Rights Act 1998. The ECHR is designed to protect human rights and fundamental freedoms.

It is unlawful for a public body to act incompatibly with those ECHR rights (section 6 of the Human Rights Act).

Individual health professionals are also governed by the standards set under the professional regulatory regime that applies to their profession.
 
Rights and pledges covering involvement in your healthcare and the NHS

Right: ‘You have the right to be involved in planning and making decisions about your health and care with your care provider or providers, including your end of life care, and to be given information and support 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, if appropriate.’

This right is about providing you with the opportunity to help plan and make decisions about your care and treatment wherever it is appropriate. You should be involved as much as you want to be in discussing your needs and preferences, and you should be given the information you need to understand the choices available to you, as well as the risks and benefits involved. You will be listened to and treated as an individual. It may not be possible to offer you the chance to manage your own care and treatment in certain circumstances, for example if you are unconscious.

Source of the right
This right is based on the new fundamental standard about personalised care, and reflects the fact that care providers registered with CQC should collaborate with patients to develop an assessment of their needs and preferences, enable and support them to make decisions about their care, and provide opportunities for patients to manage their own care and treatment if they want to do that as set out in regulation 9 of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014.

The right of people who are eligible for NHS Continuing Healthcare and continuing care for children to have personal health budgets comes from Part 6A of the National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendments) Regulations 2013.

GP services are provided under arrangements made by NHS England. Those arrangements must comply with requirements set out in regulations made under the NHS Act 2006. In particular, the relevant regulations define the core ‘essential services’ that providers must or may provide, as services for patients ‘delivered in the manner determined by the practice in discussion with the patient’ (regulation 15 of the National Health Service (General Medical Services Contracts) Regulations 2004).

In addition GPs and other doctors registered with the General Medical Council have a duty to work in partnership with patients, which must include listening to patients and responding to their concerns and preferences, and giving patients the information they want or need in a way they can understand (in line with the General Medical Council's guidance: Good Medical Practice and Consent: patients and doctors making decisions together). Other health professionals are also governed by the standards set under the professional regulatory regime that applies to their profession.

Health professionals must comply with common law requirements relating to informed consent. NHS England and CCGs have a duty to promote the involvement of patients, their carers and representatives, in decisions, which relate to the prevention and diagnosis of illness in the patients, or their care or treatment (sections 13H and 14U of the NHS Act 2006).
 
All NHS are currently doing the Oliver McGowen training which talks about his abuse and resulting death and how professionals didn't listen to him or his carers and and undertook procedures without their presence despite agreement that they needed to be there https://www.olivermcgowan.org/

Perhaps some people with a twitter following could @ the parents and ask whether lessons are really being learned

Eta tried to find them but without logging in (forgot details) I can't
 
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