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The Patients Association was founded in 1963 and continues to listen to patients and speak up for change.


Keeping you informed about the latest developments in healthcare

Up to 35,000 adults with a learning disability are being over medicated without appropriate clinical justification


 
NHS England says it is taking urgent measures to tackle the over-medication of people with learning disabilities.

Sir Stephen Bubb, chief executive of the Association of Chief Executives of Voluntary Organisations (ACEVO) stated that up to 35,000 adults with a learning disability are being prescribed an antipsychotic, an antidepressant or both without appropriate clinical justification.

Sir Stephen Bubb was asked to lead a review following the Winterbourne View scandal, which saw six workers jailed for serious abuse and neglect of patients at the private hospital near Bristol. Following on from his report, Sir Stephen has stated that although the government and the NHS have pledged to improve conditions for people with learning disabilities there has been a continued over-use of medicines in people with learning disabilities and autism. Furthermore, these medicines have been inappropriately used as a chemical restraint to control behaviour, despite guidelines recommending against this.

Katherine Murphy, Chief Executive of the Patients Association said today:

“The treatment of these patients is completely deplorable. The prescription of an antipsychotic, an antidepressant or both without appropriate clinical justification can cause long term damage to physical and mental health with undesirable neurological and metabolic side-effects. These patients must not be forgotten; mental health care is far too important for these patients to be ignored. The Government and NHS England must stick by their promises and put in place adequate provisions to prevent this unacceptable level of patient care occurring.”

 
The Law Commission Consultation: Mental Capacity and Deprivation of Liberty
 
The Law Commission’s consultation paper, Mental Capacity and Deprivation of Liberty has been published. The consultation paper reviews the Deprivation of Liberty Safeguards (the DoLS) in England and Wales. The goal is to replace the DoLS with a straightforward and accessible legal framework which provides appropriate safeguards for people who lack capacity whose care or treatment is becoming restrictive. This consultation paper is over 251 pages with 42 questions. The Patients Association is concerned that this consultation document has the potential to be ignored due to the size of the document and number of questions. However, if you wish to respond to specific questions the Patients Association will be happy to take your views. Please send your comments to dipen@patients-association.com by Friday 30th October 2015
 
Transition between inpatient hospital settings and community or care home settings for adults with social care needs: draft guideline consultation

Link to the Consultation here.
 
This guideline covers all adults with identified social care needs, including older people. It does not include children and young people. It covers transitions between general hospital and community or care home settings. It does not include inpatient mental health settings. A separate NICE guideline on transitions between inpatient mental health settings and community and care home settings is being developed.
 
The Patients Association is preparing a response and invites our readers to give their view. Please send your comments to dipen@patients-association.com by Monday 3rd August 2015.
Consultations



The National Institute of Health and Care Excellence (NICE) are now consulting on

8th July 2015 - 8th August 2015
Dementia (update): the scope

13 July 2015 - 10 August 2015
Faltering growth - recognition and management of faltering growth in children: the scope


25 June 2015 - 06 August 2015
Transition between inpatient hospital settings and community or care home settings for adults with social care needs: draft guideline consultation
 
NHS England are now consulting on:

4th August 2015
Survey on GP services at Millbrook and Lodge House Surgeries


Public Health England are now consulting on:

23rd September 2015
Consultation on draft SACN Vitamin D and Health report

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About Us
 
The Patients Association’s motto is ‘Listening to Patients, Speaking up for Change’. This motto is the basis on which we build all our campaigns. Via our Helpline, we capture stories about Healthcare from over thousands of patients, family members and carers every year. We use this knowledge to campaign for real improvements to health and social care services across the UK. In addition, our Helpline provides valuable signposting and information for patients and supports them as they navigate the Healthcare service.
 
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Our Helpline
 

The Patients Association Helpline is here to help.

 

  helpline@patients-association.com

  0845 608 44 55.

 

This is a local rate number and if a phone provider charges, we are happy to return calls. The Helpline both informs patients and gathers their views.

 

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New “Independent” Patient Safety Investigation body 'will operate without fear or favour'


 
 
A new body to investigate clinical failure and incidents of patient harm in the NHS will “operate without fear or favour”, the government has said.
 
A new investigation body which will be called the ‘Independent Patient Safety Investigation Service’ (IPSIS) will be selecting incidents to investigate.  Events it will investigate include those involving high cost litigation, “never events”, and incidents such as medication errors and wider systemic failings. This move had much to do with The Freedom to Speak Up review   (24th June 2014) that was led by Sir Robert Francis QC, who called for a ‘just culture’ instead of ‘no blame’ but this can only be created if everyone who makes up that culture is held accountable to the same standards.
 
The Patients Association has long since campaigned for an Independent body to investigate such incidents, in our report “The ‘Peoples’ Ombudsman – How it Failed us” that was published in November 2014 highlighted a need for an Independent investigatory body with an independent Appeals process, the report was written because of the high number of people who were contacting the helpline distraught, frustrated and angered by their experience of the investigatory bodies such as the Public Health Service Ombudsman (PHSO) . The Patients Association went further and also produced a follow up report, PHSO - Labyrinth of Bureaucracy, published in March 2015 giving statistical information to show the gravity of the problems and highlighted concerns faced by Patients going through an investigatory process such as:
 
66% of people who contacted the Patients Association regarding the PHSO complained about the level of investigation and the standard of the final report.
 
22% of them felt completely let down.
 
62% of patients reported that the PHSO appeared to overlook or even ignore evidence that contradicted what the Trust had said which made them feel that the investigation was never going to be fair and was skewed to favour the NHS organisation from the start.
 
40% of patients reported that they thought the PHSO seems unwilling or unable to challenge a Trust’s stance on a complaint unless the patient specifically identifies an issue to look into.
 
30% of patients who contacted the Patients Association said that they felt that that weren’t listened to or that they weren’t believed. This was even when they provided extensive evidence.
 
However, the Patients Association is very   concerned that despite being called ‘independent’ there is little evidence to show that it (IPSIS) is. We have always recommended that to ensure independence and to hear the voice of the patient, that there must be a non-government funded body or group that will and can represent the genuine views and concerns of patients. Without any patient involvement any assurances or accounts of investigation cannot be independent.
 
The government states that, “An important principle of this new service will be its ability to exercise independence and operate without fear or favour irrespective of its location in order to get to the bottom of any patient safety incident that it examines.”
 
Katherine Murphy, Chief Executive of the Patients Association said:
 
“We are very concerned that this new organisation is lacking patient representation, it will be locked with the new newly merged Monitor and TDA so how is this independent?
 
The Patients Association will continue our concern with the lack of accountability.
 
However, we welcome the creation of the investigation service, but there are concerns over how it might operate in practice. Our concern would be exactly how this body will be established and whether its independence will be guaranteed in legislation. It is also unclear what, if any, powers it will have to investigate NHS providers, or impose its recommendations upon them. However, if we want improvement, to promote learning from incidents and to improve and maintain effective patient safety, then it is critical that an independent body must involve patient representation.”

 
Drug could delay Alzheimer’s

 
Results from a recent trial suggest that a drug can slow the pace of decline for patients suffering from early stage Alzheimer’s disease
 
Data from the trial suggests that the drug, Solanezumab, can reduce the rate of progression of Alzheimer’s by about one third for patients in the early stages of the disease. At present, current medication only addresses symptoms of the disease, helping dying brain cells to function but doing nothing to prevent brain cell death. In contrast, the new drug may be able to keep brain cells alive for longer, thereby slowing the process of decline in Alzheimer’s patients.

This could be a major breakthrough, however the results are not yet definitive and further research is necessary before they can be confirmed. A separate trial, which began in 2012, is due to report next year and should provide definitive evidence on the effects of the new drug.
 
This drug is a potential breakthrough for Alzheimer’s research and could improve the quality of life of millions of patients suffering from the disease.  However, it is important to remember that the data is not yet definitive. This is the first evidence that a drug can affect the Alzheimer’s disease process, rather than just addressing symptoms. This exciting news is very promising for all those affected by Alzheimer’s disease, but we must wait until the results from the current study are released next year before we can be sure how much of an impact this new drug will really have.


Patients’ Stories


This is a new section for our newsletter where we will be featuring real patient stories. If there is a story about you or your loved one’s experiences with the health and social care system, which you would like featured, please contact us at weeklynews@patients-association.com

 
Living with Cystic Fibrosis


 
Currently in the UK, there are 9000 people living with an inherited mutated CFTR gene, causing mucus build-up in their lungs, digestive system, and several other organs: cystic fibrosis (CF). People who have CF are, unfortunately, given a very in-depth insight into a healthcare system, as they are affected by the condition from birth and it persists throughout their lifetime.

K is in her early twenties and in her words she has “been under many, many hospitals”. Her school years were interspersed with lengthy spells in hospital, and her condition progressed to the point where she required a bilateral lung transplantation (a transplantation of both lungs). As well as dealing with CF, the condition has led to several complications, causing her to become blind in one eye and develop diabetes.

Being under the care of numerous hospitals, and different departments within hospitals, K has been affected first-hand by one of the key issues the NHS is currently facing: the effective sharing of medical information. (Read more about the Patient Association’s work on this topic in our report on the All Party Parliamentary Group inquiry into Care.data)   

Hospitals don't communicate, and even different wards don't communicate with each other or get the information wrong, which has massive repercussions.” This was a significant problem at one particular hospital, “They were in the same hospital and still failed to communicate! This had a massive impact when I had my gastric tube fitted. That was awful

While speaking to K, however, she said very little about the issues she has faced during her life of NHS treatment and instead focused more on the positive aspects of her care. At the Patients Association we generally only hear of the failings of the NHS, as our primary source of information is our helpline. Hearing anecdotes of compassionate hospital staff, going above and beyond their duties to help their patient, is refreshing and reassuring:

 “I was very ill in [a hospital in the South] and it was very scary for everyone. My parents had to leave around 9/10 o’clock in the evening so I would be on my own. My nurse came into my room and stayed there all night and the rest of the next day so I wasn't alone… [another time] I was close to dying in [the same hospital] and a nurse who I was close to came to see me. She had brought a signed photo of the cast of Buffy and a Buffy shot glass for me because she knew I loved Buffy.”

 “I've had bad turns – some very, very bad turns with the NHS – but they have fought for my life, and done all they can to help me. Nurses have shouted at doctors on my behalf. Surgeons have cried for me, played jokes on me, and I've pulled pranks on them. I love my current team, and they fight their damned hardest for each of us.”

K and her family are doing their own bit for the fight against CF too. Five years ago, K’s mother decided to organise a small festival with local musicians in their back garden; they called the festival Henfest. This year’s Henfest was set in a large field, lasted two days, had nationally renowned musicians, and raised nearly £9000 for CF charities.

There is still no cure for cystic fibrosis and it will continue to be debilitating and life-threatening for those suffering from the condition. This patient’s story, however, shows that there are compassionate hospital staff in the NHS doing all they can to ease the burden of CF.

For more information about cystic fibrosis and to donate to CF research, go to: https://www.cff.org/

 
 
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