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The Cole Family Web Site
Fact Sheets
FACT SHEET - RICHARD NORMAN COLE
Personal details :
Age : 48
Date of birth : 10/11/59
Address : Linketty, 94 Cruickshank Grove, Crownhill, Milton Keynes, MK8 0HG
Home tel : 01908 564702
Wife : Jane Cole Mobile 07980 529516 – text only – profoundly deaf Work – Two Mile Ash School, Two Mile Ash, Milton Keynes Tel : 01908 562262
Daughters : Jenny Cole (18yrs) Mob – ***** ****** Sixth Form – Denbigh School, Shenley Church End, Milton Keynes Tel : 01908 505030
Vicky Cole (15 yrs) Mob – ***** ****** Year 10 – Royal Latin School, Buckingham. Tel : 01280 813065 Contingency Care Plan
Please note : Emergency care plan agreed with Willen Hospice. If Richard cannot stay at home, Willen Hospice are on “standby” to offer him care, provided they have bed space. Contact Julie Hopps, Clinical Nurse Specialist, Willen Hospice, Manor Farm, Milton Road, Willen Village, Milton Keynes, MK15 9AB. Tel: 01908 663780
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RICHARD'S CONDITIONS
(*all essential equipment underlined in italics) Advanced Stage Motor Neurone Disease (bulbar onset ALS)
- No upper body/upper limb mobility, but please be aware, loss of mobility does not mean loss of sensation, Richard still has full body sensation and experiences pain/discomfort.
- Can still walk slowly if aided, but must be held close to body with carer’s hands placed on Richard’s upper limbs just past elbows and Richard’s hands placed on carer’s hips. Gait is wobbly and he loses balance easily on corners.
- No neck control now, must be sat in reclining position and head lifted for him. Cannot lay down flat, sleeps in riser recliner.
- Speech mainly incomprehensible, needs Smartbox and foot switches for communication, but doesn’t always find them that easy to use (see below).
- Has trouble with pooling of saliva and phlegm in his mouth and throat – often needs to be stood up to assist coughing and needs soft toothbrush to clear thick secretions from roof of mouth and suction machine to clear mouth of excess fluid. (Suction machine tubing and catheters provided by District Nurses)
- Needs to be showered in reclining shower chair – again neck must be controlled, no water over face otherwise he struggles to breathe.
- Teeth also need to be cleaned in reclining shower chair. Be aware of extra sensitive gag reflex when cleaning back teeth. Has great difficulty swilling mouth and spitting out, uses syringe to clear flush right side of mouth because of head tilt.
- Needs floor standing fan to aid breathing and to keep cool (absolutely hates getting hot!)
- Last known FVC 35% in Dec 2007, (ie. breathing capacity is one third of normal capacity) but breathing has worsened considerably since then. Richard been assessed and subsequently considered not to be a suitable candidate for bipap by Prof Stradling, Oxford Sleep Unit.
Usher Syndrome
- ie. Registered blind (retinitis pigmentosa) and partially deaf - both conditions deteriorating. Guide Dog owner (dog’s name – Robert), though dog no longer working due to MND.
- Wears glasses for distance viewing, but prefers not to have them for close up (eg. using Smartbox) and wears hearing aid in right ear, volume control to be set just above 1. Needs to wear headphones (with transmitter) for televison viewing (remove hearing aid).
- Has severe tunnel vision (will not see you unless you stand right in front of him) and cataracts developing now mean even his remaining vision is blurred. Will not hear you well, unless you touch him first to attract his attention. Has particular trouble focussing when first waking up, you will need to allow him time to come to!
Asthmatic
- Uses nebulizer to administer
- Morning – budesonide and salbutamol(separately)
- Lunchtime and mid–evening - Ventolin and Saline Steri-Neb (mixed together)
- Bed time – budesonide (on its own)
PEG feeding tube
- Liquid feed and water – both administered via pump and giving sets with either bottles (feed) or flexitainers (cooled boiled water). Cartons and syringes also available for supplementary bolus feeding if required. (All supplies available on prescription and delivered by Abbott Hospital 2 Home Service).
- Feeding regimen (as established by Ciara Mackie)
Jevity – 1020ml per day fed overnight at rate of 120ml an hr over 10 hours (approx 9.30pm to 7.30am)
Cooled boiled water – 1000ml per day fed at rate of 250 ml an hr during daytime (2 litres to be boiled and left to cool the previous night)
- Medications (dissolve in cooled boiled water first, all administered via PEG tube, not orally)
- Regular – Allopurinol, 500mg a day for gout (bedtime), Omeprazole, 20mg a day anti-reflux (bedtime)
- When needed - Co-codamol, 2x effervescent tablets for neck pain , Diclofenac, 50mg 3xday for gout pain/inflammation
- PEG tube site needs daily cleaning and plate must be released and PEG tube rotated daily to avoid sticking to stomach wall.
Swollen feet
· Needs tubigrips put on to help control swelling of feet and ankles caused by sedentary lifestyle
· Needs massaging of feet and legs to aid blood circulation
Other tasks Richard will need assistance with:
- Toileting
- Scratching his head/nose/ears/chest
- Being sat up in his chair again when he has slumped down
- Changing position to alleviate discomfort (still has full body sensation and gets uncomfortable sitting in chair)
- Positioning hands/fingers on his legs
- Loosening t-shirt when he sits in chair
- Putting on his headphones/glasses/hearing aid
- Managing coughing/choking episodes
- Drinking (can only drink thickened liquids, blended tinned pears diluted with a little extra water to correct consistency – does NOT like Nutilis or prescription pre-thickened juices!)
- Wiping mouth after drinking or when drooling
- Removing saliva after coughing fit
- Removing sandymen from his eyes
- Replacing his riser recliner remote control if it slips out of his grasp
- Taking finger straighteners on/off
- Gentle physio to relieve stiff/sore fingers
- Cleaning PEG site if discharge causes tube to be sore
- Positioning foot switches for Smartbox and pager
- Rebooting Smartbox when it crashes
- Changing headphone or hearing aid batteries
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LIST OF CONTACTS
MND Care Co-Ordinator : Anna Kent, Physical Disability Clinical Specialist, Physical Disability Resource Team, Bletchley Therapy Unit, Whalley Drive, Bletchley, Milton Keynes, MK3 6EN. Tel : 01908 650419
Consultant :Dr Kevin Talbot, Consultant Neurologist, John Radcliffe Hospital, Headley Way, Headington, Oxford, OX3 9DU Tel : 01865 741166
GP : Dr Adrian Prisk, Central Milton Keynes Medical Centre, Bradwell Common Boulevard, Bradwell Common, Milton Keynes. Tel : 01908 605775
Care Agency : Daytime care provided between hours of 8.30am and 4.30pm by Guardian Homecare, Waybill House, 1 Fitzhamon Court, Wolverton Mill South, Milton Keynes, MK12 6BA. Tel : 01908 316333. Manager – Geraldine Graham
Care Funding : Richard’s care is funded by Continuing Healthcare Funding. Please notify any change of circumstances to Simone Mingay, Continuing Healthcare/NHS Funded Nursing Care Nurse Assessor, Shipley Court, Marsh End Road, Newport Pagnell, Bucks, MK16 8EA. Tel : 01908 214257
Social Services Emergency Duty Team (out of hours) : To be contacted if Continuing Healthcare unavailable. Tel : 01908 265545
District Nurse : Justine Turner, Central Milton Keynes Medical Centre, Bradwell Common Boulevard, Bradwell Common, Milton Keynes. Tel : 01908 605775
Dietician : Ciara Mackie, Specialist Dietician - Home Enteral Feeding and Domiciliary Visits, Nutrition and Dietetics, Milton Keynes Hospital, Standing Way, Eaglestone, Milton Keynes, MK6 5LD. Tel : 01908 243320
Speech and Language Therapist : Vicky Austin, Speech and Language Therapist, Milton Keynes PCT, Milton Keynes Hospital, Standing Way, Eaglestone, Milton Keynes, MK6 5LD. Tel: 01908 243095
Environmental Controls : Tess Adams, Environmental Controls Assessor, Milton Keynes PCT, Milton Keynes Hospital, Standing Way, Eaglestone, Milton Keynes, MK6 5LD. Tel : 01908 372538
Physiotherapists : Ros Hart and Hayley Arthur, Bletchley Rehab Unit, Whalley Drive, Bletchley, Milton Keynes, MK3 6EN. Tel : 01908 379440
Occupational Therapists : Delia Fielding and Claire D’Agostino, Bletchley Rehab Unit, Whalley Drive, Bletchley, Milton Keynes, MK3 6EN. Tel : 01908 379440
Clinical Neuropsychologist : Dr Emma Jones, Milton Keynes Neuro-Rehab Unit, Whalley Drive, Bletchley, Milton Keynes, MK3 6EN. Tel : 01908 379440
Abbott Hospital 2 Home Service : Abbott Laboratories Ltd, Abbott House, Norden Road, Maidenhead, Berkshire, SL6 4XE. Tel : 0800 0183799. Contact Sam Lewis or Julianna Burke
Motor Neurone Disease Association : MND Connect Helpline Tel : 08457 626262
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MNDA BREATHING SPACE KIT
The MNDA has introduced this kit, working closely with GPs, community nurses and other health care professionals. It may be that many people will never need to use a Breathing Space Kit, it’s presence in the house is designed to bring confidence and reassurance to people with MND and their carers – practical help, readily at hand, just in case.
Many doctors and other health care professionals are concerned about the provision and use of medication at home. However, it is at this time that it is essential that symptoms are managed effectively as a period of distress is remembered by families and can greatly affect bereavement. For some people, death can be very sudden. Others experience a protracted final stage, which can last for many weeks. The commonest cause of death is respiratory failure following respiratory tract infection.
The kit contains the medication that may be needed if a change of condition occurs that gives rise to distress, such as severe breathlessness, or inability to clear saliva or secretions. A GP will have provided the medication to be kept in this kit, so that sufferers will know that medication will always be on hand, even if a doctor has to be called out of hours.
What medication is provided in the kit?
There are two compartments in the box, one marked “Carer” and one marked “Doctor/Nurse”. In the carer section, there is medication that that can be given immediately while waiting for medical help to arrive (in other words, it gives carers and sufferers the ‘space’ referred to in the name of the kit).
In the “Carer” compartment:
· Midazolam – A sedative that can be squirted into the mouth between the cheek and gums. Useful for reducing restlessness, agitation, fear and anxiety
In the “Doctor/Nurse” compartment:
· Diamorphine – Given as an injection. Useful for pain relief and small doses can ease breathlessness
· Glycopyrronium – Given as an injection to dry excessive respiratory secretions
· Haloperidol – Given as an injection for nausea and vomiting but can also help with agitation, restlessness and uncontrollable hiccups
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ADVANCE DIRECTIVE FOR RICHARD COLE
Name : Richard Norman Cole date of birth 10/11/1959
If I become very ill and unable to communicate, my wishes are as follows;
I DO NOT WANT ATTEMPTS MADE TO RESUSCITATE ME
I would like Jane Cole (wife) to be informed. Jane is profoundly deaf and lipreads.
Tel. Home ***** ****** Mob ***** ****** (Text only)
Address : 94 Cruickshank Grove, Crownhill, Milton Keynes, MK8 0HG
If necessary I would be willing to go into hospital to avoid pain and distress, but not for life-prolonging treatments if the expected outcome is poor.
I would prefer all my care to be given at home but, if necessary, I am willing to go to the Hospice.
If I become unconscious, I would like fluids to be given via a vein or my PEG if necessary, in order to keep me comfortable, but not to prolong my life
If I become distressed, I would like medication to keep me comfortable.
If I develop an infection, I would like to be treated with antibiotics to keep me comfortable, but not to prolong my life.
If in the opinion of my doctors or consultants, my condition warrants invasive ventilation, I DO NOT WANT TO HAVE INVASIVE VENTILATION - my wife, Jane Cole is aware of this.
Please note I am visually and hearing impaired
I have Motor Neurone Disease. I understand the implications of my decisions, even if my life is at risk. I have made these choices of my own free will. I understand that I may change my mind about any of the above.
These are my wishes on 15/4/08
Signed : Richard Cole (by proxy)
Witness signature : Anna Kent
(And if you are now reading this and have ploughed your way through all of the above, you deserve a medal !!)
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