The service user’s perspective of intermediate care services

Heather EardleyDirector of Development

Gillie NewcombePatients Association Ambassador11 November 2015

#NAICUK

Contents

Development of the Patient Reported Experience Measure (PREM) Overview of the PREM results from NAIC 2015Next stepsThe service user’s perspective of intermediate care

Development of the Patient Reported Experience Measure (PREM)

Development of the Patient Reported Experience Measure (PREM) • First developed in NAIC 2013 in conjunction with the

Patients Association (bed and home based services only)

• NAIC 2014 – PREM extended to re-ablement services• Validated with the assistance of the Bradford Institute

for Health Research • Questions not measuring the same construct replaced• 15 questions asked in bed and home, plus an open

narrative question• Same PREM utilised for home & re-ablement due to

similarity of service provision; different PREM for bed based IC

• “I” style questions in line with “National Voices”

Do you feel there is something that

could have made your experience of the service better?

Services participating in the PREM – NAIC 2015

PREMS returned 1,934 1,461 801

From number of services 94 102 32

Total PREMS returned: 4,196

Overview of the PREM results from NAIC 2015

Selection of PREM results from NAIC 2015

Waiting for services

The length of time I had to wait for my care from the community team to start

was reasonable

Answer: Yes

I was as involved in discussions and decisions

about my care, support and treatment as I wanted to be

Answer: Yes, definitely

The online benchmarking toolkit has the full results by service

Involvement in decisions

97%

96%

82%

65%65%

Selection of PREM results from NAIC 2015 Maintaining social contact

Since having care from this service, my ability to maintain social contact has improved

Answer: Yes, definitely

Treated with respect & dignity

Overall, I felt I was treated with respect and dignity while I was

receiving my care from this service

Answer: Yes, always

The online benchmarking toolkit has the full results by service

50%

48%

47%

50%

48%

47%

“Carer time was often too late in the

morning so I got up myself and washed as

best I could”

PREM open narrative question analysis

Most common issues cited for improvement:• Joined-up, appropriate, timely and

informed services• Time for visit/treatment• Communication, attitude and

attention

Home based – open narrative question

“Having to wait from Friday - Monday

before able to leave hospital”

“My mother had no idea, that the service was going to stop as explanations, were rarely forthcoming”

PREM open narrative question analysis Bed based – open narrative question

Most common issues cited for improvement:• Communication, attitude and

attention• Facilities• Staffing

“More explanations to me and to

my wife”

“Need music and activities on daily

basis things to do”

“Staffing levels were not enough - particularly at weekends. I was often kept waiting too long”

Overview of the PREM results from NAIC 2015 – re-ablement Re-ablement – open narrative question

Most common issues cited for improvement:• Joined up, appropriate, timely &

informed services, continuity issues & discharge

• Time for visit/treatment• Communication, attitude and

attention

“15 minutes is not long enough for my needs”

“One continuous contact point across services from discharge to home care”

“Felt not given enough details about what

support was available or what support workers able to do on visits”

The service user’s perspective of intermediate care servicesGillie NewcombePatients Association Ambassador

Why me?

• When Heather first rang me and asked if I would give a presentation/talk to the Association of Intermediate Care, I said yes!!!

• On reflection I am not sure that was wise. Especially as in a second call she informed me that she would like me to represent the patients’ view point

• However I believe the Patients Association is a great organisation and try to support them in every way possible

Whilst in paid employment

• I worked in the field of care from the age of 16 until I retired at the age of 68

• As a child carer (pocket money)• As a Nurse in the NHS (last post Director of Nursing)• As a Captain in the QARNC TA• As a Nurse in the private sector (BNA)• As a Matron of a Nursing Home• As a Residential Care Home Owner• As a Domiciliary Care Provider• As a carer of an elderly mother

• Devon Senior Voice (Chair 23 branches)• Patients Association• Carer• Patient:-

– In a private hospital – In an acute hospital– In a community hospital– In receipt of rehabilitation

• Fortunately not too long a stay!

Since retiring

Change is needed

• Everyone here today knows that a change of the way care is undertaken is vital

• My concerns are how this is or is going to be undertaken

• Not a completely new situation

How much is known about Intermediate care?• I asked friends. Only one knew anything

about it - she is a financial manager.• I asked those in receipt of care. None knew• I asked at Health watch. They asked what

my concept was• I asked some providers. Most knew a little• So then I asked google • Intermediate acting between two points• Intermediate care an emerging concept

which may offer attractive alternatives to hospital care

Looking further

• So google said intermediate care could include:-– Rehabilitation (is that not for those with drinking

problems or drug takers?)– Re-ablement (that is surely for all those wonderful young

people who have been disabled by war or accidents)• I delved a little deeper but when the explanation came up

with chemical symbols I gave up• However the statement Reactive Intermediates are usually

short lived?• This may be worth a little consideration. Also owing to a

short lifetime they do not remain in the product mixture

Not negative

• I do not wish to be negative but without the understanding and support of all and most especially those of us who may well be in the receipt of home based care you will not succeed as you wish to

• It is time to stop all of the blame being put on the shoulders of those of us who were born just before or during the war. You need our co-operation as “you ain’t seen nothing yet”. The baby boomer’s are on their way

• It dos not feel great to be constantly informed by the media that it is our fault that hospitals are under pressure. Personally I do not think that is the case. Way back in the late 70’s when I was a Director of Nursing I had the unenviable task of having to go onto wards and explain why patients had had their operations cancelled (usually due to lack of staff, or emergencies blocking theatres and beds)

• It was also predicted that this could only get worse. Did anything happen then re a increase in recruitment at all levels? NO in fact numbers were cut.

• Did the NHS look to spending more on preventative measures? Well they thought about it but decided not really their role. What rubbish!

Not going away

• Unfortunately for all of you and all of us we are here to stay and because the NHS is actually the best thing since sliced bread (that shows my age) probably for a lot longer

• Unless of course you reinvent the plague/TB or maybe even drop an atom bomb

• Ghettoes of older people might work. They do it in parts of the States?!?

• We were killed off in the past but neither did we contribute so much to society. If viewed slightly differently I firmly believe that much of the problem could be eliminated

Not for everyone

I personally dread the thought of intermediate care• Why? I live alone (I do have a dog)• I do not have children and would in any case not wish to impose on them• I would dread the loneliness and because of that the build up of pain especially at

night• Being in a wet bed (other than from hot sweats)• Having strangers in and out. Some who would probably have no idea of ME and my

needs• Not being able to chose my own time in my own home for getting up going to bed or

having meals• Being rushed and feeling it was my fault that things took so long• A lack of flexibility within my care package. An example might be that on one day I

was in more pain than another so treatment would take longer (a real problem when giving end of life care. Which should never just be the physical care)

• Not being able to understand what was being said about me or to me• Falling over when trying to move and no one being able to get to me quickly• Not getting the right investigation at the right time• I could go on and on …………………

When it works

• The majority of patients who have partners would probably say they would prefer to remain in their own homes if possible

• Do we consider the feelings thoughts and pressures put on the partner? It isn't the big things that I have been told about but the ever increasing and gradual build up of pressures

• More often than not the partner has problems of their own• Intermediate care works best when you have a network of

carers involved - family, and friends being just as, if not more, important to the success than professionals

• In my home town, Closer to Home appears to be working well. However we were a trial and a excellent team has been set up and trained. Extra staff; sharing of resources; a multidisciplinary management and dedicated staff team. Of course it works

• This is just one area within a huge county

Personal experience (1)

• My most recent personal experiences have been success stories

• A package of care for my mother in the last weeks of her life. Exceptional. However it did involve three family members all of whom were qualified nurses undertaking all personal care, night sitting and so on. My mum a ex nurse as well, wanted to be in the arms of her family at her end. With her GP she plotted every detail. I did talk to her visiting professionals their assessment you need to know the way around the system?

Personal experience (2)

• Last year my cousin age 83 was admitted to the Royal Devon and Exeter not really expected to be able to return to his own home. He lives alone one up stairs bath room, no shower but downstairs WC, and has a steep drive. After 6 weeks of investigations and drug therapy he was ready to be discharged. Still wheelchair bound and needing a lot of support after just three days in a rehab ward staffed and run by Nurses, Physiotherapists and Occupational Therapists, he was up walking, able to make drinks and use a microwave. Since, his support package has been 30 minutes each morning and one hour cleaning a week. A nurse visits once a fortnight to take bloods. Oh yes he does have family and friends again ensuring that things continue to run smoothly e.g. shopping, laundry, bed changing. Now 18 months since discharge he is walking to a bus stop! Quite wonderful.

• My question to you - could this intensive three days of therapy have saved money?? Personally I would say yes and not only in his case but many of the others I encountered during the time I was a Domiciliary Care Provider. Did it need to have been provided in an acute care setting? - not really

• Did it benefit everyone including him? - yes• Who saved money? - everyone

General commentsfrom those in receipt of services• Although hospital stays were often traumatic you usually understood where you

were both as a patient and as a carer• Number of transfers in the middle of the night. Did not know where I was on

waking or any of the new team• When things did go wrong there was usually someone to complain to• Travel costs and car parking were often a problem• Getting to see a Senior Doctor often a problem. And they’re often as not quite

obviously rushed when as a older person needing time to take in what was being said. As did not often understand the terminology being used

• Needed my family to be told what was happening or going to happen• Discharge packages not being explained• Discharge packages not being acted upon. And not being set up when patients

arrived home• Equipment not in place for discharge• Care at home good when it started and the intense package being in place.

However this ceased to be the case at a later time. Hand over and training of the new team

• New provider having enough staff• The amount of pressure being placed on loved ones to top the care package up• Not what you know who you know??? So sad but in my experience often true

Illustrations of specific cases

A few actual cases which illustrate some problems you might wish to contemplate.• Eldercare man who was blind, with a Brain Tumour living in supported living his home for several years. He

wanted to remain there to die. CHC, would not support two staff for transfers. So admitted to a Nursing Home. Within two weeks was bed bound and deemed not to have capacity. So could not return to place he thought of as home. Not supported by the District Nursing team because of staff shortages?

• A lady age 80 fit and active (sailing and maintaining own boat, house and so on) admitted following a heart attack. After investigations found to need triple heart bypass. Sent home after heated discussion between medics to await surgery (not performed locally). The lady never been on medication before really concerned re surgery. When home her partner tried to contact surgery and GP for a visit. Informed not possible and GP knew nothing about her case. Once her own GP did find out the situation he arrived and apologised

• Young man severely challenged. Needs 1:1 care 24/7. Had a fit admitted to hospital. Sent home the next day with no investigation of cause just sedation. Sodium valproate and Valium. No support offered

• Young lady on legal highs threatening suicide. Self harming. Admitted to hospital. Sent home in a taxi at 3am. Social Services not keen to support. No crisis team input's actually reduced her package to 14 hours a week the next day by phone. This is a common occurrence. No extra funding given even when in crisis. A ineffectual advocate actually took her out for the day and left her in North Devon to purchase legal highs. Did not bring her home or assist when she was ill later in the night and had to be rescued

• District Nurses depleted & struggling to manage their work loads• Diabetics in need of insulin who can not manage themselves - having to be placed in to Residential or Nursing

homes as only have one visit a day• Issues around getting GP appointments - sometimes 4 to 6 weeks• Lack of re-ablement facilities following closure of Social Services homes• Shortage of EMI beds• Pressure on recruitment and training for Domiciliary Care Providers• Over regulation• Travel