THE PATIENT

PERSPECTIVE 2009

Nora Kerigan, Specialist Nurse, Royal Preston Hospital

Rasheeda Kholwadia, Regional Renal Audit Facilitator

Tracey Powell, Regional Renal Audit Co-ordinator

Nicola Reid, Regional Renal Audit Co-ordinator

BACKGROUND

Questionnaire designed by North West Renal Audit Patient Group members,

together with NW Renal Audit Group staff.

Project leads:

o Mike Venning, Consultant in Renal Medicine, MRI

o Iren Szeki, Consultant in Renal Medicine, MRI

o Rowan Worsman, Nurse Manager, Westmorland General Hospital

o Margaret Beswick, Home haemodialysis patient

o John Ashton, Renal transplant patient

o Nicola Reid, North West Regional Audit Coordinator

Aims & objectives:

o To improve the patient experience

o To improve clinical management of blood tests

o To improve medicines management

o To improve communication between patients and Health Professionals

o To provide better information

Proposed health benefits:

o Improved holistic care of the patient

o Better management of clinical complications of CKD

Evidence base:o Royal College of Physicians. The changing face of renal medicine in the

UK: the future of the specialty. Report of a Working Party. London: RCP,

2007.

o Department of Health. National Service Framework for Renal Services:

Part Two: Chronic Kidney disease, Acute Renal Failure and End of Life Care.

February 2005

BACKGROUND

METHODOLOGY

o All patients enrolled in a dialysis programme in the North West Region

on 1st April 2009 and who have been in the programme for at least three

months were included in the audit.

o Data collected using three questionnaires developed by the Renal Audit

Patient Group.

o The questionnaires sent by post with a reply paid envelope in August /

September 2009.

o Data collated and analysed by the regional audit team.

BACKGROUND

� Arrowe Park & Aintree Hospitals data is not included in the analysis as there was poor response.

BACKGROUND

MODALITY

0

10

20

30

40

50

60

70

MR

I

RL

H

RP

H

SR

H

MR

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RL

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RP

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SR

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MR

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RL

H

RP

H

SR

H

HD

PD

HH

D

Sa

talli

te

HD PD HHD Satellite Region

% o

f p

ati

en

ts

FORMS RETURNED

Percentage of forms returned (Hubs and satellites)

11.5

35.534.2

41.5

30.9

6.8

28.0

0%

5%

10%

15%

20%

25%

30%

35%

40%

45%

A AP MRI RLH RPH SRH Region

No of forms received

18 15 184 155 221 117 710

• Good % of reply with nearly all units above 25%

• A good proportion of mix from different age, modalities and ethnic background

TRANSPORT ISSUES

Type of transport used

0%

20%

40%

60%

80%

100%

MRI RLH RPH SRH Region

Ambulance Own transport Taxi Volunteer

Hospital bus More than one type Other Missing

TRANSPORT ISSUES

How would you describe the transport that you use to get to your dialysis unit?

0%

20%

40%

60%

80%

100%

MRI RLH RPH SRH Region

Good Mostly satisfactory Often unsatisfactory Poor Missing

� 20-30% patients at each units use their own transport

� Significant difference is that RPH use of taxi service is more, compared to other units who seem to use ambulance.

� Across the region there seem to be an even mixture of the use of transport

� Despite the constant concerns about the transport service over 70% of patients in the region stated they are satisfied with the arrangements of transport.

TRANSPORT

NW REGION - PATIENT RATING OF CLEANLINESS

Poor (<0.5%)Did not answer (1%)

Unsatisfactory (4%)

Mostly satisfactory (31%)

Good (63%)

The appearance and

cleanliness of the units

does not appear to be a

major concern as 94% of

the patients find them

good or satisfactory

FOOD

How would you describe the quality of the food given to you at your dialysis unit?

0%

20%

40%

60%

80%

100%

MRI &

satellite units

RLH &

satellite units

RPH &

satellite units

SRH &

satellite units

Region

Good Satisfactory Unsatisfactory Poor No Answer

FOOD

How would you describe the quantity of the food given to you at your dialysis unit?

0%

20%

40%

60%

80%

100%

MRI & satellite units RLH & satellite units RPH & satellite units SRH & satellite units Region

Too much Enough Barely Enough Too little No Answer

� There are mixed views with regards to the standards and quality of food provided by the different units with 30% of patients saying its good

� The food provided to patients is not catered for their specific renal diet or other requirements such as diabetic or vegetarian.

TRAINING

How would you describe the training you received for home Therapies ?

Majority of HHD and PD patients across the region are content with the level and quality

of training provided to them.

The concern of those patients who were not satisfied with their training was- no training renewal period for those on dialysis for a number of years.

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

MRI RLH RPH SRH HHD Region

Good Satisfactory Poor No Response

0%

20%

40%

60%

80%

100%

MRI RLH RPH SRH PD Region

Good Satisfactory Unsatisfactory Poor No response

-

-HHD

-PD

TRAINING

How would you describe the quantity of training that you received?

0%

20%

40%

60%

80%

100%

MRI RLH RPH SRH PD Region

Too much Enough Barely Enough Too Little No Response

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

MRI RLH RPH SRH All HHD units

Too Much Enough Barely enough No Response- HHD

- PD

KNOWLEDGE – HHD PATIENTS

Do you know what to do if?

Patients have theknowledge of what to do in the case of a technical crisis.

0.0

10.0

20.0

30.0

40.0

50.0

60.0

70.0

80.0

90.0

100.0

Yes No No resp Yes No No resp Yes No No resp

Machine will not start or

stops

Your water supply fails? Your electricity supply fails?

ADVICE – PD PATIENTS

0%

20%

40%

60%

80%

100%

MR

I

RL

H

RP

H

SR

H

Re

gio

n

MR

I

RL

H

RP

H

SR

H

Re

gio

n

MR

I

RL

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RP

H

SR

H

Re

gio

n

MR

I

RL

H

RP

H

SR

H

Re

gio

n

MR

I

RL

H

RP

H

SR

H

Re

gio

n

Do you receive

regular home visits?

If you need advice,

can you contact a

dialysis nurse by

telephone?

Have you ever had to

ring a specialist

dialysis nurse w hilst

on dialysis?

If yes and nurse

unavailable did the

nurse contact you

w ithin 24 hours?

Were you satisf ied

w ith the answ er?

Yes No No response

ADVICE – HHD PATIENTS

0%

20%

40%

60%

80%

100%

MR

I

RL

H

RP

H

SR

H

Re

gio

n

MR

I

RL

H

RP

H

SR

H

Re

gio

n

MR

I

RL

H

RP

H

SR

H

Re

gio

n

MR

I

RL

H

RP

H

SR

H

Re

gio

n

MR

I

RL

H

RP

H

SR

H

Re

gio

n

Do you receive regular

home visits?

Can you contact a specialist

nurse by telephone?

Have you every had to ring a

specialist nurse for advice?

If yes, and nurse

unavailable, did somebody

contact you within 24 hours?

Were you satisfied with the

advice?

Yes No No answer

NEW DEVELOPMENTS

Are you told about new developments that could alter the way your condition is managed?

0%

20%

40%

60%

80%

100%

MRI RLH RPH SRH PD

Region

Yes No No Response

122

7

2

23

14 33 5

25

1

3

4

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

MRI RLH RPH SRH HHD Region

Yes No No Response--HHD

-PD

NEW DEVELOPMENTS - HHD

How would you like to learn about New Developments?

Leaflet

38%Discuss with nurse

41%

Website

21%

0%

20%

40%

60%

80%

100%

Unit HD Satellite HD MRI RLH RPH SRH Region

Once a week Once a month Once every 6 months Never Other No Reply

COMMUNICATION

No. of times spoken to a Consultant in the last year about the management of

health problems during a DIALYSIS SESSION?

0%

20%

40%

60%

80%

100%

Unit HD

(Hub)

Satellite HD MRI RLH RPH SRH Region

4 or more 3 times a year Twice a year Once None No Reply

Renal Consultant -

- Unit Doctor

� Patients will either speak to a renal consultant or unit doctor during a dialysis session about health concerns at least once in 3 months.

� There seem to be a small % of patients who never talk to the doctors.

COMMUNICATION

Would you like to talk to a ………… more often?

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Unit HD

(Hub)

Satellite

HD

PD HHD MRI RLH RPH SRH Region

Yes No Did not answer

0%

20%

40%

60%

80%

100%

Unit HD Satellite

HD

MRI RLH RPH SRH Region

Yes No no reply

- Unit Doctor

Renal Consultant -

How often do you talk to the nurse about your health problems?

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Unit HD

(Hub)

Satellite

HD

PD HHD MRI RLH RPH SRH Region

Once a week Once a month Once every 3 months Never Other No Answer

COMMUNICATION

COMMUNICATION

HD patients: If you have spoken to your nurse recently was it easy to talk with them about your health problems?

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Unit HD

(Hub)

Satellite

HD

PD HHD MRI RLH RPH SRH Region

Very easy Quite easy Quite difficult Very difficult No Answer

� 20% of the population state that they do not talk to the nurse about their health problems

� Those that do find it easy but time constrained.

� A small number of patients also feel that nurses are limited, scarce in number & hard to get hold of.

COMMUNICATION

HD patients: How often do you talk with your renal dietitian about the foods that you should eat?

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Unit HD

(Hub)

Satellite

HD

PD HHD MRI RLH RPH SRH Region

Once a month Once every 6 months Once a year Never Other No answer

COMMUNICATION

HD patients: How often do you talk to your renal pharmacist about the tablets you take for your renal problems?

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Unit HD

(Hub)

Satellite

HD

PD HHD MRI RLH RPH SRH Region

Once a week Once a month Once every 6 months

Once a year (PD) never no reply

� Majority of patients see a Renal Dietician at

least once a year.

� Large number of HHD

patients seem to have never been seen by a

dietician.

� Less than 20% of patients across the

region have had

contact with a renal Pharmacist

� Majority of patients

don’t know that a renal pharmacist is

available.

Renal Dietician Renal Pharmacist

COMMUNICATION

HD patients: How often do you talk to your renal dietitian, nurse or doctor about your

blood results?

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Unit HD

(Hub)

Satellite

HD

PD HHD MRI RLH RPH SRH Region

Once a month Once every 3 months Once every 6 months

Never Other No answer

COMMUNICATION

HD patients: If you have talked about your blood results in the last six months were the results clearly explained?

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Unit HD

(Hub)

Satellite

HD

PD HHD MRI RLH RPH SRH Region

Yes No No answer

COMMUNICATION

HD patients: Would you like to discuss your blood results more often?

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Unit HD

(Hub)

Satellite

HD

PD HHD MRI RLH RPH SRH Region

Yes No No answer

� 75% of patients have spoken to a health professional in the last year with regards to their blood results

� 75% of patients in the region had their blood results explained to them

� There is a split with some patients who would like their blood results explained more often and & others who don’t.

COMMUNICATION

HD patients: How often do you talk to your renal social worker about social care?

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Unit HD

(Hub)

Satellite

HD

PD HHD MRI RLH RPH SRH Region

Once a month Once every 6 months Once a year Never Other no reply

Majority of patients are not aware that renal social workers are available if they have any relevant queries

Patients who are aware of renal social workers commented that they were hard to get hold of and not available when needed

INFORMATION

Proportion of patients wanting more information on diet

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Unit HD Satellite HD PD HHD All modes ofdialysis

%

More information No more information Missing

50%> patients would like more information on renal diets.

Would prefer easy recipes to prepare in form of leaflet

Guideline of what food should be eaten and avoided and their value

INFORMATION

Proportion of patients wanting more information about drugs

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Unit HD Satellite

HD

PD HHD MRI RLH RPH SRH Region

More information No more information Did not answer

INFORMATION

Proportion of patients who want to know more about blood tests

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Unit HD Satellite

HD

PD HHD MRI RLH RPH SRH Region

More information No more information Did not answer

Information on blood

test results are readily

available at some

units

Patients are divided

on whether to receive

this information

Some patients do not

understand what the

test results indicate –

so don’t find it useful.

INFORMATION

Proportion of patients who are always given the results of their blood tests

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Unit HD Satellite

HD

PD HHD MRI RLH RPH SRH Region

Always given results Not always given results Missing

Both at RPH & RLH

patients are given a print

out of the monthly blood

results on routine tests

HHD & PD patients also

receive a copy of their

blood test results

INFORMATION

Proportion of patients who know they are entitled to benefits

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Unit HD Satellite

HD

PD HHD MRI RLH RPH SRH Region

Know about benefits Do not know about benefits Did not answer

Majority of patients are informed or know about what they are entitled to or

where to get information from of their entitlement. This is fairly uniform

across the region

INFORMATION

Do your carers get enough information?

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Unit HD Satellite

HD

PD HHD MRI RLH RPH SRH Region

Did not answerNot enough information for carersEnough information for carers

Home therapy

patients feel that

there carers

receive enough

information

Some patients feel

there carers are

not equipped or

receive enough

help and

information to aid

them

INFORMATION

Does your GP receive enough information from the hospital?

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Unit HD Satellite

HD

PD HHD MRI RLH RPH SRH Region

Always enough information Usually enough information

Sometimes enough information Never enough information

Did not answer

Some patients perceive

that drug and recent

changes in health is not

updated on a regular

basis to the GP or vice

versa

Majority of the time

information does not

tally up

Patients need to be self

aware of what

medication they are on.

HOLIDAYS

Did you know that you (and your carer) can have a holiday away from home

with dialysis at another centre?

%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

HD Satellite

HD

PD HHD MRI RLH RPH SRH Region

Yes No No answer

HOLIDAYS

Do you have a holiday co-ordinator at your renal unit?

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

HD Satellite

HD

PD HHD MRI RLH RPH SRH Region

Yes No Don't know No answer

EMOTIONAL SUPPORT

Percentage of patients recording problems coping emotionally

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Hub Unit

HD

Satellite

HD

PD HHD MRI + Sat RLH +

Sat

RPH +

Sat

SRH +

Sat

Region

Yes No No answer

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Hub Unit

HD

Satellite

HD

PD HHD MRI +

Sat

RLH +

Sat

RPH +

Sat

SRH +

Sat

Region

Yes No

Have you had any help dealing with your mood or behaviour problems

As it can be seen by the graph that

there is an unmet need which needs

to be addressed here by all units in

the region

Patients Requirements

Particular requirements patients have and how well their requirements are met by

your dialysis unit?

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Hub Unit

HD

Satellite

HD

PD HHD MRI RLH RPH SRH Region

Hearing Mobility Language Sight Cultural Religious Diet Other

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Hub Unit

HD

Satellite

HD

PD HHD MRI RLH RPH SRH Region

Very Well Quite Well Not Well Not at all No answer

PATIENTS’ OVERALL EXPERIENCE

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Hub Unit

HD

Satellite

HD

PD HHD MRI RLH RPH SRH Region

Good Mostly satisfactory Often unsatisfactory Poor Did not answer

What is Your overall experience of your dialysis care ?

NW REGION PATIENTS’ OVERALL EXPERIENCE

Good

61%

Mostly satisfactory

27%

Often unsatisfactory

5%

Poor

1%

Did not answer

6%

PATIENT CONCERNS

Other

26%

Timing

9%

Quality of life

11%

Staffing levels and

training

12%

Information

12% Communication

14%

Treatment

16%

Do you have any concerns about your dialysis care

PATIENTS’ SUGGESTIONS

Communication

21%

Staffing issues

20%

Timing

17%

Environment

12%

Other

12%

Treatment &

technology

5%

Equipment and

supplies

5%Information

4%

Food

4%

Do you have any suggestions to improve your dialysis care?

ANY QUESTIONS?