Helping Gwen

Equipment referral

 A District Nurse (DN) calls to ask if we could deliver equipment to a patient called Gwen Jones, who lives just outside Goodwick

Gwen is 77 and has a life limiting disease.  The DN does not think she has more than a few months to live.  She is frail and unsteady on her feet and has had several falls.  Her husband is 83 and has arthritis and angina.  He does not like to leave his wife alone in the house. They have so far refused to have any outside help.

Gwen’s mobility is now so poor that the skin on her sacrum is damaged and she needs a pressure relieving seat cushion.  The DN knows she can get this from the Shapes community store, but she has chosen to ask the Paul Sartori Foundation to supply it because she knows we will probably deliver it today and she also hopes that, when we deliver, we will be able to persuade Mr and Mrs Jones to have some help from PSF.

The Nursing Assistant (NA) who runs our equipment service delivers the cushion and manages to persuade the couple to at least consider having some help from PSF.  The Matron calls and makes an appointment to go and talk to them the next day.

Assessment and information visit

The next day the Matron visits to describe the services we can offer.  The couple agree that it would be useful if PSF could supply someone for 3 hours one morning a week to help Mrs Jones have a shower and enable Mr Jones to get out to the shops, bank and for his own doctor and hospital appointments.

The Matron completes the necessary patient and health and safety assessments.  Back at the office she asks the NA that the Joneses have already met to do the first visit

Day Respite Package

This day respite package continues successfully for 6 weeks.  During this time PSF allocate 2 additional staff to some of the shifts.  This ensures that we now have 3 staff, known to the Joneses and familiar with Mrs Jones’s needs, who can be called on when she needs more care.

Staff call the office after each shift so all the Care Management Team have also built up a good picture of Mrs Jones’ situation and needs.

One Saturday evening, the DN calls the on call Hospice at Home Co-ordinator.  She reports that Mr and Mrs Jones both have bad colds.  Mrs Jones also has a chest infection which has made her breathless, confused, incontinent and agitated.  The GP has suggested that she should go to hospital, but Mr Jones says he had promised he would look after her at home ‘until the end’.  He is very upset.

Rapid Response package

In discussion with the DN, the Hospice at Home Co-ordinator agrees to provide night care and every night and blocks of day care  This will give time for the antibiotics that have been prescribed for Mrs Jones to work and also give Mr Jones 3 days to rest and get over the worst of his cold.

She visits the house to update assessments and deliver a commode and back rest that the DN has also requested

For 72 hours PSF NAs and nurses attend to Mrs Jones’s hygiene needs and ensure that she gets her medication, plenty of nutritious fluids and adequate rest.  She slowly improves, but continues to need help with personal hygiene and gets up to the commode several times at night.

Team working

The DN persuades Mrs Jones to accept a referral to Social Services.  Funding is approved for a carer to visit morning and evening to help with washing and dressing and getting ready for bed.

Unfortunately, none of the agencies can find a carer to take on the work until the following week.  PSF agree to cover these shifts in the meantime.

PSF also continue to offer the 3 hours a week day respite to Mr Jones.  As he is finding it difficult to sleep properly at night, they also offer 3 nights cover a week for him to catch up on his sleep.

Mrs Jones continues to deteriorate.  The DN feels her care needs are now health care needs, so she makes an application to the Local Health Board (LHB) for NHS Continuing Health Care Funding to provide more help.  This is successful and the LHB takes over the cost of the 2 daily visits provided by Social Services and agrees to provide 4 nights cover as well.  PSF agree to cover the other 3 nights.

The DN has also requested a profiling bed for Ms Jones.  This is approved, but the NHS servicecannot deliver it until the following week.  The DN asks PSF to provide one in the meantime.  This is delivered the same day by the Matron and Equipment Facilitator.  The DN helps to transfer the patient on to it.

Last days of life

Over the next 2 weeks, PSF staff note a steady decline.  Mrs Jones is bed-bound, no longer taking food or fluids and is usually unresponsive.  Staff are worried that Mr Jones is becoming exhausted because he does not leave his wife’s side for fear that he will not be there when she dies.

The DN feels that Mrs Jones has only 1 or 2 days to live and says she would be grateful for any extra help PSF can offer.  Mrs Jones can no longer swallow her medication, so the DN has set up a syringe driver to control her pain.  She has also put her on the Integrated Care Pathway for the Last Days of Life.

PSF offer longer periods of help in the day, so Mr Jones can have a break.  The PSF NAs are able to persuade Mr Jones to take some rest, by reassuring him that they will call him straight away if his wife’s condition deteriorates.

The next night, the PSF NA notes that Mrs Jones’s breathing has become shallow and irregular and her pulse is weak.  She wakes Mr Jones up and he is able to be by his wife’s side when she dies an hour later.

The NA notifies Care on Call and waits with Mr Jones for the doctor to come and verify the death. She asks if she can help with phone calls etc, but Mr Jones just wants to talk about his life with his wife.  After the doctor has been, the NA carries out ‘last offices’, with Mr Jones helping by choosing his wife’s favourite clothes and doing her hair.

The NA offers to stay with Mr Jones until the morning, but he declines this.  She leaves messages informing the DN, GP and other agencies providing carers, of the death.

After the death

The next day, the member of the Care Management team who knows Mr Jones best, calls to see if there is anything we can help with

When PSF staff visit to collect the bed and other equipment, they make sure Mr Jones is OK.  It is clear that the undertaker is helping with practical issues and neighbours and friends are providing support.

6 weeks later, the PSF Support Worker writes to Mr Jones to offer bereavement support.  He accepts the chance to talk things over and finds the session very useful, but feels he does not need further support as he has a lot of support and understanding from friends.

                                                         (The name of this patient is fictious but the services provided are based around a real scenario)