Press release

Summary Care Record to benefit millions of patients with long term conditions, say patient groups

This news article was published under the 2010 to 2015 Conservative and Liberal Democrat coalition government

A year on from a Ministerial review that confirmed the importance of Summary Care Records patient groups are advocating its use

A year on from a Ministerial review that confirmed the importance of  Summary Care Records in supporting urgent and emergency care, patient groups are advocating its use to improve care for the millions of people with long term conditions they represent. 

The Muscular Dystrophy Campaign recently recommended that their patients consider adding important information about their conditions to their Summary Care Record to improve their experience of hospital care. Mencap, Asthma UK, Diabetes UK and the British Lung Foundation are also now looking to raise awareness among their members about how the record could benefit patients when they are being treated by doctors and nurses in an emergency who may unfamiliar with their particular condition.                                                                                                                                                                                                                     
The Summary Care Record is a secure, electronic patient record which is currently being introduced in England. Last October’s review, commissioned by Health Minister Simon Burns, restricted the record to carrying basic information about medications, allergies and bad reactions to drugs. So for example, patients with asthma would no longer need to be asked to repeat their medical history while struggling to breathe. Patients can however speak to their GP about adding extra information they may want the NHS to know about them in an emergency to their Summary Care Record. 

The main issue identified by patient groups which the SCR could help remedy is patients having difficulties communicating their needs; whether it is a nurse not knowing how to tell if a patient with learning disabilities and limited verbal skills is in pain to ensuring a doctor unfamiliar with neuromuscular conditions does not deliver inappropriate treatment that could leave a patient permanently needing to use a wheelchair. 

Following the Ministerial review, patients can easily opt out of having a Summary Care Record if they wish to by using the opt out form and freepost envelope included in letters being sent to patients or by consulting their GP. As an added safeguard, patients will always be asked their permission before their SCR is viewed.

Health Minister, Simon Burns, said:

I am delighted that, a year on from our review, patients and groups representing them are seizing the initiative in exploring how the Summary Care Record can best meet their needs. They have given us valuable insights into just how crucial it is that clinicians have the right information at the right time to deliver the safest, most effective care.

With the Summary Care Record, patients are very much in the driving seat. They can decide, in discussion with their clinicians, what extra information, over and above core data about medications and allergies, they may want the NHS to know about them in an emergency. This has the potential to transform the experience of healthcare for millions of patients with long term conditions and for their families and carers.

Medical Director, Professor Sir Bruce Keogh said: 

It is heartening that, a year on from our review, trust and confidence in the Summary Care Record is building. Patients with long term conditions come into frequent contact with the NHS, often needing unplanned and emergency care from clinicians unfamiliar with them or their specialist condition. It cannot be right that some of these patients feel they have to carry around medication information on scraps of paper or are asked to accurately recall important health information when they are ill and vulnerable.

The Summary Care Record offers patients the reassurance that they can easily make the most crucial information about their condition available to anyone treating them.

Neil Churchill, Chief Executive Officer of Asthma UK, said:

Summary care records are a vital step forward in delivering safe and effective patient care. Patients with asthma can have long and detailed medical histories and it is unrealistic to expect them to repeat these whilst they are struggling to breathe, and causes unnecessary pain and stress. As a consenting patient with a long-term condition, I expect my medical details to be available wherever they are needed, which will ensure my safety in emergencies and improve consistency and quality of care whichever part of the NHS I deal with.

Caroline Stevens, Interim Chief Operating Officer at the British Lung Foundation said: 

The Summary Care Record will bring many benefits for patients but especially those with a lung disease who are often admitted to hospital in an emergency if their condition flares up unexpectedly. The records will mean that healthcare professionals have the most current information and will be able to treat patients quickly, efficiently and accurately. We will be working to raise awareness of the record amongst all of our members.

Nic Bungay, Director of Campaigns, Care and Support at the Muscular Dystrophy Campaign said:

We see the great potential for Summary Care Records to support staff across the NHS in dealing with rare conditions, such as muscular dystrophy, and are committed to raising awareness of the scheme amongst our supporters. Our recent report into hospital care for neuromuscular patients, Hospitals in Focus, highlighted a multitude of incidences when patients would have benefitted from being enabled to present information on their conditions in a formal way.

We encourage patients to take ownership over the records and to communicate the ways in which they feel the record could best be used to support individual care.

David Congdon, Mencap’s head of campaigns and policy, said:

For patients with a learning disability, the potential benefit of the Summary Care Record would be if they are able to add key information about their needs that they want clinicians to know at the point of treatment. This could be important information about how they communicate, for example, how they show they are in pain. The record could also provide contact details for their carer.

 ”Mencap’s landmark Death by Indifference report in 2007, and subsequent reports and inquiries, have shown that people with a learning disability face discrimination within the health system, and in some cases die needlessly.  Consequently, information in a patient’s Summary Care Record could prove vital for health professionals, especially in cases where a person communicates non-verbally and is therefore reliant on health professionals having sufficient knowledge and understanding of them to provide good and safe healthcare.”

**Bridget Turner, Head of Policy and Care Improvement at Diabetes UK, said: **

Summary Care Records are an important part of improving access to information which could prove vital in emergency situations to ensure people with diabetes receive timely and appropriate treatment. We will be looking raise awareness about the record among our members over the coming months.

**Notes to editors:  **

1) To date, 8.8 million SCRs have been created and 33.5 million patients written to. There are twelve areas in England where over half of the patient population has a record.

2) The current recorded opt out rate is 1.24 per cent.