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 Care Campaign For The Vulnerable

Care Campaign for the Vulnerable is learning of the pressures faced by conscientious led Care Providers striving to offer a caring and safe environment to both service users and staff. Safety monitoring is proving to be a invaluable care assist tool - bringing a more open and transparent culture into care homes as well as saving valuable resources within the care home sector and the NHS

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Emma’s Story

26th June 2018 - 0 comments

According to the National Audit Office,

• NHS England estimates that around 62% of people who were screened using the checklist went on to have a full assessment in 2015-16.
• Clinical commissioning groups (CCGs) reported that approximately 29% of people who were referred for a full assessment were assessed as eligible for CHC in 2015-16.
• Therefore, overall, NHS England estimates that only about 18% of screenings undertaken led to the person being assessed as eligible for CHC in 2015-16.


Compass cited a BBC report about CCGs that indicate the National Framework Guidelines are being interpreted differently causing a vast disparity between areas. https://www.continuing-healthcare.co.uk/continuing-healthcare-guidance/bbc-report-highlights-disparity-in-nhs-chc-funding

The experience of one widow, left caring for her disabled daughter, who is one of the longest surviving childhood cancer patients in the West Hampshire’s CCG’s has been that the system is designed to fail and is wide open to corruption and deliberate abuse. Despite multiple co-morbidities, which are recognised late-effects of developing treatments in the 1980s, West Hants CCG first tried to off-load the cost of her rehab from a later stroke, by passing her on to Dorset CCG, when moving her could have been very detrimental. They preferred a geriatric stroke centre, which was seriously understaffed and frankly failing, to a more expensive option, without considering the psychological impact and health risks to a girl who until her stroke, was living life to the full. When the parents argued for their daughter, and complained to their MP, they were effectively expelled and excluded from any support whatsoever.

There are plenty of advisory videos and guidance online, about how the system should work, but they are simply not the reality. It seems the CCGs know if they deny any access to CHC assessments, they can deny the case. If no assessment has been completed, the patient has no access to the appeal process, or the ombudsman. Without having gone through these channels, their access to any legal action is also blocked. A solicitor whom the mother believed would challenge the case, then used her daughter’s legal aid, purportedly £10,000 to fight a general cause on government policy on behalf of McMillan. Effectively, the CCG can make the patient disappear. Officially, a very ill and disabled patient should automatically be assessed for CHC by a multi-disciplinary team, before discharge from hospital to establish the funding body, so that the patient is not left without care. According to the guidelines, local authorities must not provide it where there is an underlying primary health need (according to pre-designated and rated conditions, so falls to the NHS. However, this patient has discovered that hospital discharge systems have been designed to pass patients’ into ‘community care’ by default. The other ploy to avoid being answerable is to make it difficult for anyone to know who is responsible for CHC assessments, to keep CCG numbers secret from the public, to insist that no specialist can consider a self-referred case and to give GPs incentives not to make requests for funding, or therefore, refer them. When the mother then filled out her own CHC assessment form, according to the chart, although the GP convened a meeting to placate her, and devise a care plan, it was not as she believed orchestrated as multi-disciplinary team. When a patient requires a type of service, the CCG are supposedly under a legal obligation to provide it. Instead, they try to make the patient go to inappropriate and often detrimental organisations, already in their book of ‘friendly associates’. This patient had a brain injury due to intrusive surgery, into the central cortex, but was deemed not ABI on paper. She has needed medically supervised physio and hydrotherapy and was sent to the Sports Centre. She had a swollen thyroid and obvious signs of severe depression and distress. The doctor that attended stood and watched her have a melt-down, threatening suicide and then went away. The mother had to pay for a scan on the thyroid herself.

As a long-term cancer survivor, the daughter should have continued to come under oncology outpatient and community nursing services. Instead, because she appeared to be functioning well before the stroke, she was completely discharged.

After the stroke and once ‘dumped’ into the community, the system’s hidden agenda is to asset strip. Even though the disabled adult daughter has no assets of her own, her mother has been means tested by social services. Whenever a request was made for a CHC assessment, or a referral to the neurology unit, the Business Services Authority rang to look at her mother’s bank accounts and house. Not only has she been required to pay for MRI and CT scans, physio-therapy and provide all aspects of care, she has had to suffer the added insult of officials smirking and saying “Oh you’ve got a nice house.” Before discharge, patients’ carers should be risk assessed for the impact of caring on them. Supposedly, they are entitled to respite. The amount social services deemed to pay was £30 which just about paid for the tax to take the patient to her ‘therapy’ which the carer was paying for herself.

Submitted by Penny

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Our Director's statement to why Care Campaign for the Vulnerable was set up.


Report from Marbrook Centre in Cambridge on the benefits to safety monitoring in communal areas for residents and staff.


Dominic Grieve Westminster Speech 2018 on Care Campaign For The Vulnerable Safety Monitoring In Care Homes

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Care Campaign Government Proposal

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Dominic Grieve MP

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Care Campaign for the Vulnerable is learning of the pressures faced by conscientious led Care Providers striving to offer a caring and safe environment to both service users and staff. Safety monitoring is proving to be a invaluable care assist tool - bringing a more open and transparent culture into care homes as well as saving valuable resources within the care home sector and the NHS

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