Response from Royal National Institute of Blind People (RNIB)

A new start: consultation on changes to the way CQC regulates, inspects and monitors care

August 2013

General remarks

As the largest organisation of blind and partially sighted people in the UK, RNIB is pleased to have the opportunity to respond to this consultation.

In order to aid our response, we surveyed 23 blind and partially sighted people about their experiences of NHS care. Respondents answered questions via email, telephone and in writing. Focus was placed on the “fundamentals of care”, access to information and the “expected levels of care” as outlined in section two of the consultation document.

Our discussion with patients did not focus on any of the more complex logistical or technical matters set out in other sections of the consultation document. All participants are happy to participate in further discussion either via telephone or by attending a meeting: CQC may want to take advantage of this during its consulting process and can contact RNIB for further details.

Specific questions

1. What do you think about the overall changes we are making to how we regulate? What do you like about them? Do you have any concerns?

RNIB welcomes the aim of the CQC to strengthen its monitoring and rating systems and to move away from “tick box” ratings. However, we would like to note that many of the fundamental problems in healthcare stem from a lack of resources and low staffing levels and these must be addressed if services are to meet satisfactory standards.

We believe emphasis should be placed on improving services rather than simply rating them: the most vulnerable people in society will not be able to exercise patient choice about where they go to receive care. Consequently, “consumer choice” is not a viable means of improving services.

1.1 Using people’s experiences of services

RNIB welcomes the precept that people’s experiences of care should be a key source of information for CQC inspections.

However many patients do not know what a high quality service looks like. In a recent study by RNIB, many patients rated their treatment for the eye condition wet age-related macular denegation as “very good” when their treatment had actually been seriously delayed and resulted in permanent sight loss. Patients simply did not know what they should expect.1 CQC inspections should be mindful of this and ensure patients are informed about the care they should have received before providing feedback.

We also note that many older patients we speak to are reluctant to make complaints and to be seen to be “making a fuss” about their care. Patients also tell us that they are concerned to highlight issues while they are still undergoing care for fear of retribution.

Furthermore, we highlight the need to make a concerted effort to collect the views of the most vulnerable people in care, which includes blind and partially sighted people. A provider may be capable of giving good care to the majority of patients and receive few or no complaints from this group. However, the same provider may struggle to give adequate care to people with additional needs and this may not be picked up if those people were not able to give feedback.

In our experience, the NHS does not usually provide information in a format that people with sight loss can access, such as email, large print, audio CD or braille.2 Blind and partially sighted people believe the following solutions will help them feedback should problems with their care arise:

1 RNIB and the Campaign Company (2013) “Don’t lose Sight! Don’t Delay!” RNIB and the Campaign Company at www.rnib.org.uk/sos 2 Sibley (2009) “Losing Patients” RNIB and Doctor Foster.

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1.1.1. Accessible information - being asked for your opinion

Information, surveys and initiatives such as The Friends and Family Test must be made available in accessible formats such as large print, email and over the phone. The Standard for Accessible Information, which is currently in development, must incorporate the need to make surveys like these accessible.

People with sight loss need to know about these feedback methods in order to use them. People with sight loss often fail to see notice boards advertising how they can provide comments or complaints.3

Survey responses need to be monitored for equality issues in order to monitor how many people with sight loss have been able to voice their concerns.

1.1.2 A point of contact in providers

Among the patients that RNIB spoke to, there is widespread support for the promotion of a “matron” figure within the hospital ward whom patients could report problems or breaches of the “fundamentals of care”. This role could be replicated in GP surgeries and care homes.

“I would like to be able to ask for a change of staff or ward if I suffer discrimination or abuse. The only way, in my opinion, this could be done is by a senior member of staff going round a ward and checking on patients when a patient could inform her/him discreetly about abuse or discrimination".

1.1.3 Engagement through inspections

During site visits a concerted effort needs to be made to speak to people with sight loss about their experiences. The number people with sight loss, or other communication barriers, that inspectors speak to, needs to be monitored to ensure that the voice of people with sight loss does not go unheard.

1.2 The ratings system

3 For a fuller discussion of this topic please see RNIB’s contribution to the review of the complaints system May 2013.

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We applaud the CQC’s aim to “make sure the public has access to timely, independent, clear, accurate information about the quality and safety of their local services.”

We understand that CQC will share information about local providers with commissioners, local Healthwatch, local authorities and health and wellbeing boards. However, it is not clear whether those groups will then be obliged to provide that information to patients or patients groups.

In order to locate information about local health services, a number of people we surveyed stated that they would talk to family and friends or to their Local Authority. Many respondents felt that they couldn’t or wouldn’t get information from a website. These responses reflect previous results we have had from similar surveys.

In order for people with sight loss to find out how their local services have been rated, particularly those people of an older age, information will need to be available from a number of different sources and in an accessible format.

RNIB would like clarification on the plans to ensure members of the public with sight loss will be able to access the information about how their local providers have been rated. We understand that summary reports of CQC evaluations are currently available in alternative formats and that this fact is advertised through NHS Choices website. However, the availability of this material needs to be more widely known to bodies such as Healthwatch, GP surgeries and Local Authorities so that patients can request the information from the sources they are likely to go to for information. Patients who can access the NHS Choices website are not likely to need information in an alternative format such as large print or braille since they are likely (though not certain) to be able to access the information online.

2. Do you agree with our definitions of the five questions we will ask about quality and safety (is the service safe, effective, caring, responsive and well-led)?

RNIB would first like to comment on the wording of the definitions of “caring”, “responsive” and “effective”:

2.1. "Is it caring?”

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CQC definition: By caring we mean that people are treated with compassion, respect and dignity and that care is tailored to their needs. For example, do care home staff understand people’s individual needs, spend time talking to them and make sure they have the opportunity to take part in activities that they enjoy?

The phrasing of the definition of the question “Is it caring?” is problematic in that the patient is very much the object of action. We suggest rephrasing this definition so that the patient is an agent. In this way, the precept that the patient should be treated with “dignity and respect” - as an active agent - is implicit in the definition as well as explicit. This would be more in line with the RCN definition of dignity: when dignity is present people feel in control, valued, confident, comfortable and able to make decisions for themselves.4

To make this definition more empowering to patients the “smoke detector” indicators - which are more patient centred - should be included in the definition of the question: particularly the indicator which covers whether patients are involved, as much as they want to be, in their treatment and care.

The remaining content of the definition is in accord with the opinions of the patients that RNIB has spoken to. Patients want to be treated with respect and dignity (see point 4.3 below); they want staff to understand their individual needs and to treat them as individuals (see points 4.1 and 4.3 below) and they also want compassionate care (see point 3.3 below).

2.2 “Is it responsive?"

CQC definition:By responsive, we mean that people get the treatment and care at the right time, without excessive delay, and that they are listened to in a way that responds to their needs and concerns. For example, is a GP surgery open at times to suit the needs of the local population?

4 Royal College of Nursing's definition of dignity: 2008 available at: http://www.rcn.org.uk/development/practice/dignity/rcns_definition_of_dignity

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We note that the indicators for "Is it responsive?” are very technical and are largely set against national framework outcomes on waiting times. These do not seem to provide an answer to the question, “is it responsive?” but an answer to the question – “does it meet its waiting time targets? “ It is not clear that these indicators would be adequate smoke detectors to indicate whether a provider was not responsive to people’s needs.

We suggest that the terminology - used in the example of “responsive” situations in the consultation document - which relate to the choice and independence of patients be incorporated into the definition of “is it responsive?” so that it is explicit that patients should be enabled to remain as independent as possible. Remaining independent and able to make decisions about care preferences is a key aspect of enjoying dignity and respect.

We suggest that the requirement that patients be “listened to” be represented in the indicators. This should be in terms of what is currently included on structural organisation – i.e. waiting times. It should also be included on a personal level - i.e. whether patients feel their preferences and opinions have been taken into account during their care. A major recurring concern and source of annoyance and danger for patients that RNIB speaks to is that they are not listened to and that their thoughts, opinions and comments are ignored by staff. If staff do not listen to patients, even about fairly trivial matters, it demonstrates a lack of respect and responsiveness and could usefully act as a “smoke detector” for serious care issues. A typical everyday example follows:

“In a previous stay [in hospital] I had to explain to some nursing staff that to take my blood pressure, they needed to use a large cuff. I had been advised by my cardiac consultant that a small cuff would give a false reading. One night a nurse argued with me that a standard cuff was sufficient. When another nurse checked it the next day, he commented that my blood pressure was very high the night before. I told him what had happened and although I didn't name the nurse (she never told me her name) my description of her told him who it was. I had three of four arguments with this night nurse during my three week stay. When I raised it with the senior nurse on the ward, he said the she had told him that I was confused. I most certainly was not.”

2.3. “Is it effective?” 6

CQC definition:By effective we mean that people’s needs are met, and their care is in line with nationally recognised guidelines and relevant NICE quality standards or that effective new techniques are used which give them the best chance of getting better or living independently. For example is there an effective ‘enhanced recovery’ programme following surgery?

RNIB welcomes the suggestion that cataract operations will be included in the indicators for effectiveness. However it is not clear what aspect of cataract surgery will be monitored and we would like clarification on this issue. RNIB has recently commissioned a major report looking into the variation of cataract surgery rates across England, which includes evidence of restrictions to first and second eye surgery across England. It also includes the suggestion that PROMs are introduced into cataract surgery.

We would welcome confirmation that evidence gathered by patient bodies on provider and commissioner adherence to NICE Guidelines, Quality Standards, Technology Appraisals and guidance from medical colleges will be used as evidence of potential failure. RNIB routinely tracks commissioning policies for ophthalmology and we are happy to share our findings.

We would also like clarification on whether the implementation of NICE Technology Appraisals will be included in surveillance scanning

Finally, we would like clarification on how CQC will monitor the quality of care for conditions where no NICE guideline or quality standard exists. For example, diabetic eye conditions are the leading cause of sight loss that prevent people from working, however, NICE has not committed to producing a guideline or quality standard for this topic. Guideline development and quality standards are not always produced due to need but mainly due to the fact that there is a sufficient evidence base.

2.4 General points on the questions for quality and safety:

The majority of people that RNIB has spoken to had no strong view on whether the top-line questions on safety and quality are clear or not.

We found that some patients want top-line information or none at all, and others want to find out more about specific indicators and really

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understand how their local service has been rated. Therefore information needs to be staggered in its presentation so that patients are not confronted by a mass of information unless they want to be. This situation is largely the case at present on the NHS Choices website.

2.4.1 Patient fear of inadequate services

Many patients we surveyed did not want to know if their local services were failing as it would worry them if they then had to attend that service. Patients commented that:

I think that’s actually quite difficult because the whole idea of choosing a hospital isn’t about treatment; it may be about access for family and friends to visit – particularly if it’s going to be a long stay.

And:

If it wasn’t safe then you wouldn’t want to go there - but if you’ve got to go there then you’d be worried about it! I know you can go anywhere you want to now but I don’t want to go outside where I live.

And:

If the ratings are good/excellent people will withhold complaints because they will not think that they will be listened to.

Therefore, there is a need to inform patients that their feedback will be welcomed and not affect their ongoing care. Patients should be informed of the steps that are being taken if a provider is found lacking - which must include the time-scale that this will happen in. This will help reassure patients that action is being taken to improve services and that it is being taken quickly (i.e. as proposed, within months).

In addition, with the ratings system, patients should be able to find out which particular aspect the provider is failing in, as is the case at present; it may be that their personal care is not affected which would be less worrying.

2.4.2 Patient suspicion of ratings8

Patients were inclined to question how trustworthy the ratings would be, with many patients we spoke to saying that, if they had to make a decision about which GP or hospital to visit, they would prefer to go on “personal recommendation” from a GP or a friend or family member rather than a rating.

"I would find it difficult to trust ratings not knowing the credibility of the agency giving the ratings. I am inclined to rely on recommendations by friends and relatives".

These concerns highlight the need to clearly explain to patients what information has been used to rate providers and how their concerns, if they have any, will be taken into account.

3. Do you think any of the areas in the draft fundamentals of care above should not be included?

No. Patients have been consistent in the view that all the “fundamentals of care” listed should be included on the final list. Some patients felt that certain criteria would not apply to themselves, but were nonetheless important for other patients, for example, "I will not be held against my will, coerced or denied care and treatment without my consent or the proper legal authority".

3.1 Help to eat and drink and to use the toilet

Many individuals have pointed out that some of the “fundamentals” would be more important to them personally than to other patients. A number of people who had been previously let down by NHS services highlighted the following two “fundamentals” as being particularly important:

I will be helped to use the toilet and to wash when I need it I will be given enough food and drink and helped to eat and drink if I

need it

These “fundamentals” are of vital importance to blind and partially sighted people who often experience problems navigating their way to the toilet and locating and managing to eat and drink food and water when it is placed near them but they are not told where it is or what it is.

As such, the patients that we spoke to were particularly pleased that these “fundamentals” included reference to patients being “helped” to

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undertake these activities rather than simply receiving food or being told where a toilet is. Comments received by RNIB on this topic include:

"The food one is important - I had a cup of tea – they put it down where I couldn’t get to it: I couldn’t see it. And you {have to} say “Excuse me - where is it?” If you haven’t got a voice - you’ve had it!"

And:

"At a recent hospital stay I had in the eye hospital they would just put a lump of chicken in front of you and walk away. They wouldn’t tell you that it was there".

After leaving her blind husband in hospital overnight, one carer returned to find that he had not been drinking or eating:

"He hadn’t had a drink as he said that he did hear someone say, “there’s a cup of tea here” but he didn’t know if they were talking to him or someone else {or} where they had put it … He missed his lunch for the same reason … I arranged to be there {in hospital} from 8:30 pm to 5:30 pm every day while my husband was in hospital and this I did, otherwise he might have starved."

3.2 Being discharged from care

A number of patients highlighted the importance of the following statement: When I am discharged my ongoing care will have been organised

properly first

This issue is particularly acute for blind and partially sighted people who face all the barriers that sight loss produces in addition to the illness that they have been in hospital for. Not getting appropriate help after a stay in a hospital or care home can lead to even relatively minor ailments becoming much more serious, as in the example below, where the patient simply needed help to change a dressing which could have become infected:

"When I was discharged from hospital, I organised my own ongoing care with my GP surgery. This was mainly to do with the lack of knowledge of hospital staff of the way my ongoing treatment

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needed to be undertaken [due to sight loss]. I had to arrange daily visits to the surgery to change the dressings, following my discharge. If I had left it to the hospital, they were merely going to contact my GP asking for a follow up appointment the following week"

Another respondent with severe sight loss commented:

"I asked for the care to be sorted when I got home from hospital when I had my knee done and I had to fight for my care to be sorted out. Sometimes they [providers] think someone else’s done it. I asked in the hospital and they told me I couldn’t get help. How was I supposed to do anything on a pair of crutches?"

4. Do you think there are additional areas that should be fundamentals of care?

4.1 Taking sight-loss in to account

There was a lot of support among patients that RNIB spoke to for the inclusion of a sight loss specific “fundamental” as there is massive concern that that the additional barriers people that with sight loss face in accessing care are not recognised within the NHS. There was a general concern from patients that the “fundamentals” as listed would not lead to people with sight loss receiving care that is responsive to their particular needs.

While the issues of going to the toilet and eating have been dealt with already in the “fundamentals” as they stand, the problems people with sight loss face in accessing treatment are pervasive in the care pathway: sight loss affects all areas of care. For example, people with sight loss may experience difficulty locating a GP practice or hospital; navigating the building; undertaking medical tests; staying in an unfamiliar environment as an inpatient, and managing medication. As such, patients that RNIB spoke to wanted to see something in the “fundamentals” that would ensure that their additional needs are met by the NHS so that they do not receive a poorer standard of care than sighted people.

"I want my visual impairment to be recognised and to be dealt with correctly by implementing reasonable adjustments such as guiding, orientation of environment, (wards, clinics etc.) information provided in MY preferred format and not the format usually used such as photocopies of photocopies."

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"I expect to have any additional needs to be met with awareness and to a good standard across all care."

"When I was in hospital, a nurse left white tablets on a white dish on a white top table. I was expected to take them with food: but I could not see them when the food arrived. Consequently, I missed the right time for my medication."

RNIB understands that a sight loss specific “fundamental” may not be appropriate as it would be too specific for the purposes of the statements. However, we do suggest that a “fundamental” which highlights to need to take into account patients’ additional barriers to care should be included and that as a consequence disability training for staff be made more robust. For example:

My care will be responsive to any additional needs that I have resulting from disability or a long term condition.

4.2 Communication

Comments from patients that RNIB spoke to often focussed on “communication” as an issue for blind and partially sighted people in that they often felt that their care plan and treatment options had not been explained to them in a way that they could understand: the use of technical jargon and the lack of information in an accessible format such as large print, braille or email were two major barriers faced by people with sight loss. The following comments are typical of the general attitude of patients with sight loss.

“I will receive my diagnosis in a language that I can understand"

“I will be given details of any treatment I undertake and the treatment to be explained to me in a manner I understand”

“I would like all the front line staff to introduce themselves before treating or carrying out a procedure on me; knowing who is near me would have psychological benefits"

“If I have to sign a consent form, it should be in an accessible format. The staff should make sure that I have understood what I am signing for.”

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In light of the communication related nature of many of these comments and the clear importance of good communication between staff and patients in order to achieve adequate care we also suggest the following “fundamental” be included.

I will be communicated with in a way that I understand and in a format that I can access.

4.3. Respect and Dignity

A number of patients felt that there should be a “fundamental” related to being treated with respect and dignity:

“A lot of hospitals don’t give you dignity. You’re still a person when you are at home but in hospital you are a number.”

“I will be spoken to with respect and not shouted at or belittled because of my age or infirmity i.e. shouted to or spoken loudly to because of my impaired vision/ grey hair and wrinkles/poor mobility. “

“I will be treated as a person with a problem and not as being a problem.”

“Respect” and “dignity” are core NHS Values as defined in the NHS Constitution; they are arguably the cornerstone which all other “fundamentals of care” rely on. Respect and dignity should therefore be explicitly stated in the “fundamentals” and not solely in the questions on quality and safety which are second line considerations: a breach in respect and dignity should be regarded as the most serious of failures.

We therefore suggest the inclusion of the statement:

I will be treated with respect and dignity.

5. Are the fundamentals of care expressed in a way that makes it clear whether they have been broken?

Yes, RNIB believes that an individual could decide if a service has met the “fundamentals of care”. However, many patients that RNIB spoke to were hesitant about how about making formal complaints and unsure how they would report when the “fundamentals of care” had been broken.

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One common suggestion to combat the problem was that each ward in a hospital would have a designated member of staff who would check whether patients had any complaints and whether their care was meeting the “fundamentals of care”. Many respondents were reluctant to make formal complaints but felt they would be happy to discuss their level of care and any concerns informally and discretely with a designated member of staff.

6. Do the draft fundamentals of care feel relevant to all groups of people and settings?

See above point 4.1 above which outlines the inclusion of people with long terms conditions and disabilities.

For more information please contact Clara Eaglen, RNIB Policy and Campaign Manager (Eye Health), on ceaglen@rnib.org.uk or call 020 7391 2123.

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Appendix:

About RNIB:

We are a membership organisation with over 10,000 members who are blind, partially sighted or the friends and family of people with sight loss. 80 per cent of our Trustees and Assembly Members are blind or partially sighted. We encourage members to be involved in our work and regularly consult with them on government policy and their ideas for change.

As a campaigning organisation of blind and partially sighted people, we fight for the rights of people with sight loss in each of the UK’s four countries.

Our priorities are to:1. Stop people losing their sight unnecessarily2. Support independent living for blind and partially sighted people3. Create a society that is inclusive of blind and partially sighted people's

interests and needs.

We also provide expert knowledge to business and the public sector through consultancy on improving the accessibility of the built environment, technology, products and services.

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