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

Conference: Reaching for Gold

The Patients Association and Waltham Forest CCG held a conference on the Gold Standard at Waltham Forest Town Hall on Monday 6th July, Over 100 were in attendance and the experience has been inspiring.

Many different health & Social Care organisations were in attendance to support our work. We were delighted with the turn out.

Attendees were pleased with the event overall, some were quoted as saying:

“The opening session by Angela (Rippon) and then Helen (Davenport) – Really motivated and demonstrated passion to ensure delivery and good care.”
“Thanks to you and your team – we all found it useful and inspiring!”

Students from Leyton Sixth Form were also present, and gave their thoughts on the importance of the Gold Standard Project and its impact.


We’d like to give a big thank you to all who attended, we were pleased to have you with us and hope to hold many more events such as this in the future.

Patients Association's response to the Charges for missed appointments

UK lags behind other countries for survival from breast, bowel and cervical cancer and survival after a heart attack new comparative study finds The idea of charging patients for missing a doctor’s appointment which is being considered by the Secretary of State for Health was questioned by The Patients’ Association today.  We acknowledge the cost to the tax payer of wasted appointments – instead of introducing more bureaucracy we should work together to let the public know the true cost of not attending your appointment and the missed opportunity for this appointment time to be offered to someone in need.
Katherine Murphy, the Chief Executive of the Patients Association, said:

“Patients do have a responsibility and this includes cancelling appointments that they are unable to attend or no longer need. Such a charge would be difficult to administer in terms of proving the cancellation was not for a true and justified reason and then putting in place an effective payment system. Who would administer the fine – the NHS is ripe with bureaucracy – let’s try and ask the public to act more responsibly and put systems in place so it is easier for them to cancel unwanted appointments.  Fining a patient for not turning up for an appointment has no apparent benefits, it would not stop it happening again and moreover the concept runs contrary to the principles of the NHS constitution.”  

On the Secretary of State for Health other suggestion of putting a price tag on NHS prescriptions, Mrs Murphy said: 

“This idea has merit because it would help to educate patients on the cost of drugs and how much taxpayers’ money would be saved by unnecessary stocking them up when they are not needed.”

The Patients Association support any concept that looks.

Patients Association Backs New Student Nurse-Patient Initiative

Plymouth University’s adult nursing degree programme is piloting a scheme that allows student nurses to work with patient participation groups (PPGs) at GP surgeries.
The project is the first of its kind and will initially involve 23 GP surgeries in the South West. Student nurses are participating in non-clinical activities and have lead social media campaigns, run communication sessions on issues such as sexual health, and raised awareness of vaccination programmes for young mothers.
The Patients Association, in collaboration with NHS England, have organised a conference at the university on 16th July where the findings of this trial will be presented. It is hoped that having the experience of working in a PPG will provide nurses with an insight into patient concerns and better their communication skills, which will aid them when they start their career in a clinical care setting. Their work will also hopefully provide an important contribution to the communities in which they are working.

Katherine Murphy, Chief Executive of the Patients Association, said:
“We are delighted to work with Plymouth University on this exciting new initiative. The commitment of students and staff to real patient engagement has been impressive and we hope this will be the start of a long term relationship that will go from strength to strength and include all GP Practice Patient Participation Groups.”

The National Institute of Health and Care Excellence (NICE) are now consulting on
Older people - independence and mental wellbeing: consultation on the draft guidance
29 May 2015 – 10 July 2015
Find Out More
Oral health promotion approaches for dental teams: consultation on the draft guideline
29 May 2015 – 10 July 2015
Find Out More
Children's attachment: draft guideline consultation
1 June 2015 – 13 July 2015
Find Out More
Intravenous fluids therapy in children: draft guideline consultation
1 June 2015 – 13 July 2015
Find Out More
Menopause: consultation on the draft guidance
1 June 2015 – 13 July 2015
Find Out More
Preterm labour and birth: draft guideline consultation
1 June 2015 – 13 July 2015
Find Out More
Social care of older people with complex care needs and multiple long-term conditions: consultation on the draft guidance
1 June 2015 – 13 July 2015
Find Out More
Transfusion: draft guideline consultation
1 June 2015 – 13 July 2015
Find Out More
Tuberculosis (update): draft guideline consultation
1 June 2015 – 13 July 2015
Find Out More
Parkinson's disease (update): call for evidence
22 June 2015 – 20 July 2015
 Find Out More
Type 2 diabetes: guideline consultation 2 information
26 June 2015 – 24 July 2015
Find Out More

House of Lords Consultation: Impact of the Equality Act 2010 on Disabled People

The House of Lords is investigating the impact of the Equality Act 2010 on disabled people, and the Patient’s Association invites anyone with a specific interest in this issue to get involved in the consultation. If you live with a disability, or care for someone who does, we would like to hear your views on how successful the Act has been for disabled people and whether you consider that it is an improvement on the previous law (the Disability Discrimination Act 1995). The Act places a duty on employers to make reasonable adjustments to any elements of the job which place disabled employees at a significant disadvantage. We are specifically interested in how well health providers achieve this, and whether this obligation is actively enforced by the government. We would also like to hear about the Equality and Human Rights Commission and the role it plays in tackling disability discrimination, particularly in relation to compliance with the 2010 Act. Finally, we would be interested to hear how taxi accessibility can and should be improved, and whether you feel the Public Sector Equality Duty, introduced by the Act in 2010, has improved with recent changes.
If you have a specific interest in any of these issues, or more generally in how well Government policy on equality serves disabled people, and would like to share your views we would be grateful to hear from you. Please email the Patient’s Association at 
The Law Commission’s consultation paper, Mental Capacity and Deprivation of Liberty has been published. The paper can be accessed on their website: here.

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 by Friday 30th October.
Transition between inpatient hospital settings and community or care home settings for adults with social care needs: draft guideline consultation


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 are preparing a response and invite our readers to give their view. Please send your comments to by Monday 3rd August 2015.


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.

Our Helpline

The Patients Association Helpline is here to help.

  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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Micro-enterprises: bringing care back into the community

A recent study from the University of Birmingham found that micro-enterprises are able to provide more personalised, flexible care than larger organisations, often for a lower cost. Micro-enterprises are set up and run by members of the public with experience of health and social care services, in order to provide support to those who need it in the local community. These organisations are able to provide greater continuity of staff, greater staff autonomy (to tailor care to each individual) and better access to managers than larger organisations. As a result, micro-enterprises provide a valuable alternative to large care organisations as they are able to be more personalised, which particularly improves quality of care provided within the home.
One remarkable example of a micro-enterprise in action is the Debenham Project in Suffolk. The project was established over five years ago and now has over one hundred volunteers working in the local community to provide health and social care to those who need it, particularly those suffering from dementia or caring for someone with the condition. The volunteers provide a wide range of services including advice, lunch clubs and local transport. Due to their personalised and localised nature, micro-enterprises can offer support to potentially marginalised communities which would otherwise have limited access to care services. For example, Debenham became one of the UK’s first dementia friendly communities as a result of volunteers’ hard work and support from professional bodies including local authorities and the NHS.
However, micro-enterprises often struggle to get started or to stay in business as they have limited access to funding and advertising. Introduced in 2014, the Care Act encourages local authorities to support more microenterprises, and this is vital to enable these organisations to flourish. This is supported by Jeremy Hunt’s recent speech encouraging individuals and communities to take more responsibility for care of their elderly relatives and neighbours. Hopefully with this government support, micro-enterprises will become more widespread, thereby taking pressure off large care organisations while giving communities access to high quality, personalised care.
If you would like more information about finding a micro-enterprise in your area, visit here. If you would like to volunteer for the Patients Association please contact


Health Secretary calls for revolution in personal development for Health

Health Secretary Jeremy Hunt has called for individuals to personally be responsible for the costs of the NHS

In a speech to the Local Government Association conference this morning, Mr Hunt said if current trends for residential care of the elderly continued the country would need more than 38,000 new care home beds in the next five years. Furthermore, Mr Hunt has called for major personal and professional responsibility if our NHS is to be maintained. The Health Secretary states that obesity costs the NHS £8 billion a year, while smoking related illness costs £2.7 billion a year, people must start taking more responsibility if we are to have a viable, patient orientated and cost effective NHS. 

In addition, Mr Hunt reiterates his support for an integrated health and social care system based on personal and professional responsibility. In his speech he stated that what happens in social care is inextricably linked to what happens in the NHS. It would be easy but quite wrong to balance the books by reducing access to care or the quality of care delivered as it will be the patients who suffer the most.

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

“The Patients Association welcomes these new changes, although there are a variety of financial challenges that Local Government has faced, we must maintain the overall aim of the NHS; to be a patient centred service. We will fail in our responsibilities to the most vulnerable if we approach those efficiency challenges separately, allowing the pressure of budgets to blind us, then patients who require urgent care and those vulnerable in society will be the ones who will suffer the most. Furthermore, the Government must provide assurances and adequate provisions that money will be available for social care for the long term. Social care is far too important for older people to be ignored, the Patients Association support Mr Hunt’s emphasis on protecting the elderly via effective government funding and personal development. An interlinked health and social care system must be protected and promoted with patient care at the heart of it.”
Second Report on the Effect of the NHS Constitution

The report, released by the Department of Health, concluded that staff awareness and understanding of the NHS Constitution has significantly increased since 2012. However public and patient awareness has decreased, therefore this is the key area where improvement must be focussed.

The NHS Constitution was created to outline the rights, responsibilities, values and principles of the NHS and to empower patients by clearly outlining their rights. However, the recent report from the Department of Health concludes that patient awareness of the constitution has dropped to 24%. It recommends that in order to be effective and fulfil its aims, patient and public awareness must significantly increase.

However, evidence suggests that as awareness increases, so does support for the constitution. Furthermore, 81% of NHS staff believe that awareness of it is important for the NHS Constitution to be effective. The report concludes that given staff awareness is slowly increasing, the best solution is to take a long term approach and build up awareness over time.

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

“The Patients Association strongly supports the NHS Constitution as it is a key resource which enables patients to exercise their rights. Therefore the lack of awareness from patients is disappointing. We agree that the key for improvement is to focus on improving patient awareness, as the constitution can only prove useful when patients are aware of their rights and how to enforce them.” 
New GP IT system designed to improve quality in the NHS criticised

An investigation by the National Audit Office into a new General Practice IT system, the General Practice Extraction Service (GPES), designed to extract data from GP practice computers, has found that the system is not delivering what it was set up for, and is not likely to do so in the future.
The National Audit Office found the GPES has cost £40m to set up, £26 million more than initially intended.  Furthermore, it took 4 years longer than planned to complete. The GPES was expected to provide data for a range of organisations on the numbers of patients being diagnosed with certain conditions and receiving particular treatments, from all GP practices in England. Only one customer however, NHS England, has so far used the data, mainly because of the time taken to extract it from the system.

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

“NHS IT remains in a poor state, with the Department of Health having the highest number of IT projects rated as unachievable. The fact that this development was 4 years late and cost £40 million instead of £14 million, raises serious questions about the accountability for this project. Given the financial pressures on an already stretched NHS, this is simply unacceptable. HSCIC has stated that they are in the process of improving the system - we at the Patients Association hope this will not be an empty promise. This kind of failure and waste of resources impacts most on vulnerable patients.”


UK faces uphill task in improving care quality, new report states

UK lags behind other countries for survival from breast, bowel and cervical cancer and survival after a heart attack new comparative study finds

A new report comparing performance across high-income countries by the Nuffield Trust and the Health Foundation, Focus on: international comparisons of healthcare quality, has been revealed today. The report is based on analysis of 27 care quality indicators in up to 15 OECD countries between 2000 and the last year and has found that UK should do better in preventing unnecessary hospital admissions and improving survival from some of the biggest killer diseases.

The report states that the UK performance since 2000 has improved on various measures such as cancer screening and flu vaccination. However, it lags behind several countries on a substantial amount of areas including preventable hospital admissions for chronic respiratory conditions, - asthma and lung diseases-   lower cancer survival and higher mortality rates from heart attacks and strokes, with 10% of people dying from these conditions over the age of 45 after 30 days, compared to 8.2% in Norway and 8.4% in New Zealand.

The UK also lags behind other countries for survival from breast, bowel and cervical cancer and survival after a heart attack a new comparative study finds.  

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

“It is clear from this analysis that the UK can and should do better. Our poor performance on cancer survival compared with other leading countries is well-known and continues to be a concern. It is also worrying that a UK citizen appears to have a significantly lower chance of surviving a heart attack than people from other parts of Europe. We must find out the reasons and to learn from the healthcare and social systems in other countries in the report if we are to produce an effective and improved patient centred health and social care system that benefits all patients for the long term.”

Children’s mental health must be protected

While one in 10 children and young people has a treatable mental illness, just one in four receives treatment
Treatment for children with mental health could get worse instead of better due to  the continual reduction of funds for children’s mental health, warns Paul Burstow, the former Care Minister and architect of Government reforms. Mr Burstow has advocated a joined up approach interlinking all departments together to think and act on mental health,.  This  cross- government approach is vital to protect mental health services.

Furthermore, Mr Burstow has accused former Education secretary Michael Gove of downgrading the significance of child mental health support in schools despite a rise in pupil’s mental illness.

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

“The Government must provide assurances and adequate provisions that money will be available for mental health services, particularly if it will help children for the long term. Mental Health in early years is far too important to be ignored and policymakers need to understand that the problem will grow as the children grow into adults with more severe needs. Despite the Government cuts, mental health should have parity of esteem with physical health including parity of resources and outcomes and must be protected and promoted in a joined up health and social care system with patient care at the heart of it.”

100,000 more people missing out on social care compared to 2014

‘More than one million elderly people are not receiving the social care they need’, says Age UK

The charity’s analysis, based on data from the English Longitudinal Study of Ageing, has calculated that more than one million elderly people are not receiving the home social care they need. The report states that as the older population is growing, the government has cut social care funding by almost a third to £5.46bn which is leading to grave concerns around decreasing funding for the basic services elderly people have come to rely on, such as help with washing, dressing and eating.

Age UK said this has resulted in increasing costs for the NHS with emergency hospital admissions for elderly people having increased by 22% to 2.2m a year between 2005-06 and 2012-13.

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

“With social care services facing a £4.3bn funding gap by the end of this decade, the Government must provide assurances and adequate provisions that money will be available for social care for the long term. Social care is far too important for older people to be ignored. The government must urgently invest money to protect patients now and for the long-term if we are to produce a patient centred health and social care system to meet the needs of an ageing patient population.”


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
Thank you for giving me the opportunity to tell you about the Occupational Therapy service here in the south east of England.
A few months ago my husband, Brian, who is chronically sick with various conditions had an ‘episode’; one of his problems is that he has brain damage from undiagnosed NPH ??and communication with him is difficult. This episode suddenly meant that he was out of control in his chair, slipping down and sometimes across it and I could not get him back to sitting position so that it was difficult to know whether or not to leave him at all; and feeding him was getting more and more difficult. We decided he would have to stay in bed until the matter could be solved. The GP called the Occupational Therapy service to see if there was anything they could suggest to help; we were told that it would be a three month wait; the GP then called the Rapid Response team and the Occupational Therapist from there suggested different slings in which he could be hoisted to sit in his chair. These were not the slings the carers were used to and they were actually unsuitable to spend hours sitting in. He has since that day remained in bed with the consequence that his leg muscles have wasted.
Finally on Tuesday 16th June the occupational Therapist arrived and assessed that a different chair might be the answer. The Rep for the chairs has to attend to also assess the situation and measure  him for the chair, and that is to happen next Wednesday, a further two weeks; If it is the answer then it is going to take another 2 months to get a new chair.
I have absolutely no problem with the therapist taking this action, but why did we have to wait three months for her first visit?
I am sure they are busy helping people to go home from hospital sorting out their needs, but a wait of three months for a first visit for someone at home is absurd.
I have now complained to the Community Health team; they have sent me a detailed letter to say that my complaint will be looked at and I will get a response by 16th July.
I have written back telling them that the problem is that the service does not have enough Occupational Therapist’s to provide a fully responsive service to make a difference to patients in a reasonable timescale.
I have asked them not to waste time and money investigating a problem which does not exist when what they need to address is the lack of enough therapists to meet what is going to be an ever increasing need.
I point out that the Occupational Therapist service is the weakest link in the social care system. Everything else is much more responsive.
I hope that this is helpful.                 
Feedback on last week’s Patients Story
Feedback from last week’s Patients Story on the use of ‘Yellow Cards’ which is a procedure for capturing side effects of drugs
This is a serious issue because all sorts of reactions to drugs are not being reported.
Someone I know had a shoulder operation recently and was discharged from hospital in the usual way with 3 boxes. After an operation, a patient is not always up to remembering exactly what he/she has been told about taking the medicines. He took two of the meds but thought that the third was another pain killer and didn't want to be over medicated. It is possible that this was omeprazole but he was unsure.
He went into shock and was rushed to hospital and now has to carry an Epipen.
At no point was he told about yellow card, neither was he told to report this incident to anyone.
It is imperative that patients are made aware of what drugs are, how they should be taken of course, but when you have just had anaesthesia, it should NOT be assumed that are able fully to take in what you've been told.
There should be a written description and instruction for clarity. This would take 10 minutes at most with little cost as against £250 for ambulance and other costs for treating the reaction.
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