We recognise that NHS Clinical Commissioning Groups (CCGs) have to make great savings in their annual budgets, but we have come across 3 scenarios recently that we just had to bring to your attention as CCGs seek more inventive ways to evade making proper restitution (reimbursement) to families for wrongly paid care fees who have have launched successful retrospective claims.

Watch out for the CCGs’ latest tricks to save costs

Vital Information About Paying For Care

Background:

“NHS Continuing Healthcare is a package of care arranged and funded solely by the health service in England for a person aged 18 or over to meet physical or mental health needs which have arisen as a result of disability, accident or illness. Where an individual has both health and social care needs, but they have been assessed as having a ‘primary health need’ under the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care3 (the National Framework), the NHS has responsibility for providing for all of that individual’s assessed health and social care needs. This care can be provided in a number of settings, including at home.”

If you think that your relative may a ‘primary health need’ and have been eligible for NHS Continuing Healthcare Funding (CHC) for a past period of care, start by writing to their local CCG’s NHS Continuing Healthcare Department to request a retrospective review.

If successful, your relative will be entitled to reimbursement of all their care fees paid during the period of eligibility under consideration – including the full cost of their care/nursing home accommodation – which could amount to many tens of thousands of pounds (plus interest) being reimbursed.

A retrospective review can take place irrespective of whether the patient is living or has passed away.

However, because CCGs don’t publicly advertise the fact, many families don’t even realise that they can ask them to do a retrospective review of their relative’s healthcare needs!

There is, however, a time limit as to how far back you can claim retrospectively. If you are starting a retrospective review claim now, currently you can only go reclaim care fees going back to 1^st April 2012.

The retrospective review process is supposed to engage with individual, their family and/or appointed representatives. However, it has been said by families that they felt that the MDT:

• approached the assessment with a pre-conceived outcome and had already made up their minds in advance i.e. that their relative was not eligible for retrospective reimbursement.
• ignored their views or comments and failed to gather sufficient evidence to ensure a robust assessment.
• failed to provide an accurate picture of their relative’s health and social care needs by relying too heavily on documented evidence from the care provider, even when this information was demonstrably false.
• refused to consider any evidence or comments seeking to correct the assessors’ misunderstanding or address misinterpretation of the care records or their relative’s care needs.

Historically, family representatives were often invited to attend the retrospective MDT, to provide evidence to the Panel before a decision was made. However, in more recent times, due to inherent backlogs, compounded by the coronavirus pandemic (and thousands of retrospective cases being put on hold for months until 1^st September 2020), retrospective reviews are now carried out ‘in-house’ by the CCG’s appointed nurse assessors or else delegated to third parties such as a Commissioning Support Unit (CSU).

This has largely become a paper exercise whereby the CCG will complete a Needs Portrayal Document and send it to the family or their representative in draft for comment and invite them to submit their Written Submissions document in response. Once the CCG have received a reply, their assessor will then complete a Decision Support Tool making a ‘recommendation’ as to whether or not CHC Funding should be granted retrospectively. The CCG should ordinarily follow that recommendation and will then write to the family with their decision letter and timescales for any appeal if you are dissatisfied with the outcome.

Below are 3 recent scenarios that you need to look out for:

Scenario 1 – Make sure you don’t get short-changed!

We came across a situation recently where the family had been successful with their parent’s retrospective review claim and the CCG had agreed to refund care fees for the full period in question except for the last few weeks at ‘end of life’ when the patient was admitted to hospital with an acute deterioration of symptoms. The CCG’s bizarre rationale for refusing to reimburse the last few weeks of care home fees whilst in hospital, was simply due to the fact that the patient wasn’t living in the care home, but in hospital.

This stance was utterly incomprehensible, very upsetting for the family and tantamount to penny pinching.

The CCG’s flawed arguments ignored the fact that the patient was still contracted to pay for her care at the care home even whilst in hospital.

The matter was challenged by the family’s appointed legal advisors and the CCG immediately apologised for their oversight and agreed to reimburse the family the full period during hospital admission until the date of death. However, without legal representation, it is possible that the family wouldn’t have spotted the CCG’s error or known how to mount a successful challenge.

Scenario 2 – Make sure you get paid!

Here’s another baffling scenario…

A family won their retrospective review claim after many years battling their CCG for reimbursement of their relative’s care fees. However, somewhat bizarrely, it is this particular CCG’s unique policy to repay the restitution directly to the care home and not the family! This unusual practice is contrary to every other CCG in the country that we have come across.

The family made the claim through their legal advisors, not the care home. So obviously, it is the family who are entitled to reimbursement and not the care home. That is logical sense – but not apparently to the CCG – despite it clearly being the family’s loss, not the care home’s. It seems a deliberate ploy to cause further frustration to the family by paying their restitution via a third party care home who had absolutely nothing to do with the matter. By doing so, the care home has now effectively received a (temporary) windfall and double payment: once from the family whose relative wrongly paid for their care in the first place, and now again, from the CCG! This money does not belong to the care home.

When challenged, the CCG’s answer was that they’ve always done it this way and paid the care home directly because: (a) it’s far more convenient from an administrative perspective (ie rather than paying the family whose claim it is!) and; (b) as the family paid the care home, it is the care home’s responsibility to reimburse them not the CCG. Really! We cannot get our head round this incomprehensible logic.

The CCG say that the care homes are told to expect payment and are expected to pay it over to the family immediately once received. Sure! But on this occasion, somewhat unsurprisingly, the family weren’t initially told by the CCG that monies had already been paid to the care home. So, in effect this means that a care home could sit on a family’s restitution monies for a number of weeks, leaving the family to chase them for payment. What happens if a care home refuses to pay or goes bust in the meantime?

By involving the care home, not only has the CCG has created more periphery administration for other parties, but moreover, has now heaped further distress and anxiety upon the family who will have to chase the care home to get their lawful restitution payment released.

This is a farcical situation which also raises a serious question of breach of data protection legislation – paying funds to a third party who have no involvement in the retrospective review process or legal entitlement to those monies.

Tip: If you are successful in your retrospective claim, insist early on that the CCG pay you directly. If they refuse, consider lodging a formal complaint and reporting the matter to NHS England.

What Evidence Do I Need To Prove My Claim For Past Care Fees Paid?

Scenario 3 – Don’t forget your entitlement to interest!

Reimbursement, often referred to as ‘restitution’ or ‘redress’ should include interest as of right. This is set out in the NHS Refreshed Redress Guidance which came into effect on 1^st April 2015.

The Redress Guidance states that “where maladministration has resulted in financial injustice, the principle of redress should generally be to return individuals to the position they would have been in but for the maladministration which occurred.”

That includes paying interest! Part of the rationale is that if the money was not been spent on care fees, it could have been invested and earned interest instead.

CCGs are obliged to add interest to the restitution sum (currently paid at RPI rates) and should provide you with a detailed breakdown showing how they have calculated reimbursement of the care fees and interest payable. If they don’t, just ask them to supply their interest calculation so that you can check it is accurate.

CCGs can make mistakes, so do check the figures carefully, and query any discrepancies with them.

Can I claim interest on my refund of care fees paid?

One CCG recently tried to get away with not paying any interest on the restitution sum awarded following a family’s successful retrospective review.

The CCG agreed the patient was indeed eligible for reimbursement of past care fees paid but deliberately omitted to include interest on the restitution sum.

The NHS Refreshed Redress Guidance provides that where there has been ‘maladministration’ (i.e incompetence) the CCG should pay interest on the restitution (currently at RPI rates). This is an automatic entitlement.

Luckily, the family had the benefit of expert legal representation who saw through the CCG’s attempt to evade paying interest and immediately queried why it was omitted contrary to the NHS Redress Guidance. The CCG responded that it is not their policy to apply interest unless specifically requested to do so! So basically, if you don’t ask for it, you won’t get it!

The CCG said that only if the [family] wrote in to ask for interest, would the CCG then consider the matter and recalculate restitution applying interest.

This is a staggering abuse of power and outrageous policy, deliberately seeking to take advantage of unsuspecting individuals in contravention of the NHS Redress Guidance just to protect budgets. We wonder how many families over the years have simply accepted reimbursement from a CCG believing it to be the maximum extent of their restitution and missed out on interest, without ever knowing that they were automatically entitled to it?

Sometimes, the interest payable can be very significant, especially on a lengthy retrospective review periods spanning back several years or where the monthly care fees paid are substantial.

Retrospective Review Claims – Everything You Need To Know About Claiming Interest

What To Do If You Haven’t Received Your MDT Decision Or Received CHC Funding?

Remember – you don’t have to fight this battle alone. We recommend that you get professional help for any retrospective claim to maximise your chances of success. The sums involved could be considerable.  A good advisor will review all the relevant care and medical records and give you advice as to your chances of success. They can also draft your Written Submissions to argue your case in a professional and robust manner.

Here’s a selection of related blogs on the subject that will help you:

Confused? Read This Before You Start Your Retrospective Appeal for CHC Funding…

Retrospective Reviews for past periods of care – avoiding fatal mistakes

Where is your retrospective CHC claim up to? If you’re frustrated by delays, read on…

How To Recover Care Fees After A Successful Retrospective Review

Know your rights – Appealing the CCG’s refusal to grant CHC funding

If you need help with your retrospective review – collating records and assessing your relative’s chances of successfully retrospectively recovering care fees or help with advocacy, visit our 1-2-1 Support page for more details.

For more information, browse through our Care To Be Different website to find lot of free tips, resources and hundreds of helpful blogs.

Get our book How To Get The NHS To Pay For Care (paperback or PDF).

You can also speak to a specialist CHC Nurse Advisor or our General Advice Line.

For specialist advocacy or legal help for any stage of your claim for CHC, visit our 1-2-1 Support page.

This series takes a detailed look at the domains of the Decision Support Tool. This week we examine the first three descriptors in the Skin domain, to help you assess your or your relative’s “level of need” in this important domain.

Don’t miss parts one, two, three, four, five and six of this series:

Get Help Breaking Down The Decision Support Tool: An Overview

Get Help Breaking Down the Decision Support Tool: Breathing Part 1

Get Help Breaking Down the Decision Support Tool: Breathing Part 2

Get Help Breaking Down the Decision Support Tool: Nutrition Part 1

Get Help Breaking Down the Decision Support Tool: Nutrition Part 2

Get Help Breaking Down the Decision Support Tool: Continence

Following the 2018 revisions of the DST, Skin moved “up” from number 8 to number 4. As in the 2012 version, it still follows the Continence domain, highlighting the common interaction between these domains: incontinence greatly increases the risk of tissue breakdown as the skin is often moist. However, unlike the 2012 version, in the updated 2018 DST the Skin domain is followed by Mobility, emphasising the significant impact of immobility on skin integrity. Any interrelation between domains (complexity), and its potential impact on the delivery of care (intensity/unpredictability), should be considered in the analysis of the four Key Characteristics.

The assessed levels of need in the Skin domain range from ‘No Needs’ to ‘Severe’. There is no descriptor for a ‘Priority’ level of need in this domain, indicating that an issue with skin integrity is unlikely to present an immediate risk to life, in and of itself.  That being said, the complications arising from pressure damage or other skin wounds can certainly be life threatening and swift, skilled treatment is essential. The vast majority of people being assessed for CHC will fall into the descriptors for a ‘Low’ or ‘Moderate’ level of need. The ‘High’ and ‘Severe’ levels of need are reserved for those suffering from extensive or non-healing wounds, which will usually require specialist treatment by the Tissue Viability Nurse (TVN).

*IMPORTANT – When looking at skin integrity and its likelihood of breaking down, care providers use the “Waterlow” risk assessment. This brings together a number of risk factors – age, mobility, continence, BMI, prescribed medications – to give an overall score, ranging from “no risk” to “very high risk” – the higher the score, the greater the risk.

The following clinical factors are relevant to the assessment of no needs, low and moderate level needs in this domain:

• What is the condition of the person’s skin – dry, paper, friable, healthy?
• Is the person well-nourished and hydrated? What is their BMI?
• What is the person’s “Waterlow*” score?
• Does the person have any existing skin conditions – eczema, psoriasis, pemphigoid?
• Do they require the application of prescribed creams?
• How frequently are these applied, once daily or more frequently?
• Is the person continent of urine and faeces?
• Do they use incontinence products (e.g. pads)?
• Is the person independently mobile?
• Are they able to alter their position in bed and/or chair?
• Do they require prompts, assistance and/or encouragement to change their position regularly?
• Is any pressure-relieving equipment in use – i.e. cushion, mattress, heel protectors?
• Is the person’s skin intact (not broken)?
• What is the extent of any existing skin damage – i.e. how deep are the wounds**?
• What treatment regime is required and who delivers it?
• Is the treatment effective – i.e. are the wounds responding/improving?

**NOTE – Wounds are “graded” from 1-4 using a wound chart. Grade1 describes very superficial damage to the top layer of skin (epidermis), such as reddening or blanching. Grade 4 describes extensive damage to all three layers of the skin (epidermis, dermis, hypodermis). Extensive skin damage puts the underlying bones and joints at risk.

IMPORTANT – The DST provides the following guidance to the MDT when assessing needs in this domain: Evidence of wounds should derive from a wound assessment chart or tissue viability assessment completed by an appropriate professional. Here, a skin condition is taken to mean any condition which affects or has the potential to affect the integrity of the skin.

This underlines the importance of having clear, dated evidence to confirm the extent of any risks to skin integrity, their underlying causes and the treatment required. Any skin damage should be clearly recorded on a body map and all wounds should be measured and graded. All treatments and interventions should be recorded in detail, including whether the wound is responding to treatment. This is particularly important for those receiving care at home, where record keeping is often less robust and wounds are treated by District Nursing teams.

Now that we’ve outlined the type of things the MDT will be considering in this domain, let’s take a look at the descriptors for ‘No Needs’, ‘Low’ and ‘Moderate’ levels of need. For each descriptor, we provide a case study to give you a better understanding of how the levels of need might be applied at your or your relative’s assessment.

NO NEEDS

CASE STUDY – NO NEEDS

Mrs. X’s skin is healthy and intact. She is well nourished and remains fully continent of urine and faeces.

Mrs. X is independently mobile and is able to change her position in bed and chair throughout the day and night.

Mrs. X is not prescribed any emollients or creams, although she does like to use Aveeno after her bath to keep her skin soft which she applies this herself.

Mrs. X presents with ‘No Needs’ as she has no risk of pressure damage or skin condition.

LOW

CASE STUDY 1 – LOW

Summary of Needs:

Suffers with dry skin

Doubly incontinent

Waterlow = 17 (high risk of skin breakdown)

Care Plans:

Skin intact but Waterlow has increased and skin integrity more vulnerable since becoming doubly incontinent

More incontinent now and wears pads

Dry skin to hands, not to body

Spends most of her time in chair. Able to reposition.

Nurse Assessor’s comments:

Mrs. X is doubly incontinent and has impaired mobility and awareness of her various needs. She requires monitoring of her skin condition and is assessed as being at high risk of skin breakdown (Waterlow score of 17). Her care plans on admission and thereafter indicate that her skin has remained intact and baby lotion is applied once a day for moisturisation which has since been changed to Zerobase. Mrs. X is noted to be able to reposition herself for pressure relief, both when seated and lying down. She alters her position spontaneously throughout the day and night and does not require prompts or encouragement to do so.

Mrs. X presents with a ‘Low’ level of need as she is at risk of skin breakdown which requires preventative intervention once a day or less than daily without which skin integrity would break down.

CASE STUDY 2 – LOW

Mrs. X’s skin is healthy and intact. She does not require the application of any creams and does not suffer from any skin conditions.

Mrs. X has been unwell in the past week with a chest infection and she currently has a grade 1 pressure sore on her right ankle after a period of bed rest, measuring 1cm x 1cm. A small dressing has been applied for protection and Mrs. X’s leg is elevated on a cushion to relieve pressure. Care records indicate that the wound is responding well to treatment.

Mrs. X presents with a ‘Low’ level of need as she has evidence of pressure damage and/or pressure ulcer(s) either with ‘discolouration of intact skin’ or a minor wound(s).

CASE STUDY 3 – LOW

Mrs. X has a recent history of cellulitis, and her skin remains vulnerable.

Care Home Records:

• 02/06/2021: Request Matron visit due to Mrs. X’s legs being swollen, red and angry. Matron checked over, done observation, has cellulitis. Antibiotics prescribed. Also, fluids restricted to 1500mls. Matron also going to arrange bloods. To observe, do NEWS score tomorrow. If becomes redder or tracks up legs to ring 111 for medical advice. If becomes unwell or flu like symptoms, high temp, will need to go to hospital.
• 14/06/2021: Matron visited to review legs. Redness now reduced, to complete antibiotics. If new concerns to call back.
• 27/06/2021: Leg healed, no signs of infection or redness.

Additional information provided by senior carer: Mrs. X’s skin is currently intact. She no longer has cellulitis. Her skin is monitored for signs of infection and a body map is completed each week.

Mr. X presents with a ‘Low’ level of need as he has a skin condition that requires monitoring or reassessment less than daily and that is responding to treatment or does not currently require treatment.

MODERATE

CASE STUDY 1 – MODERATE

No skin problems.

No history of skin conditions.

Doubly incontinent.

Proshield as cleanser and has barrier cream applied after each personal care intervention.

Airflow mattress.

Previously (long time ago) had some redness to sacrum but no longer present.

No pressure ulcers.

Skin condition good.

Emollient once a day after shower/strip wash – all over body.

Care provider records:

SBAR report dated 10/10/2019

Waterlow risk assessment score = 24 (very high risk)

Waterlow risk assessments:

11/06/2018: 23

30/10/2018: 23

18/02/2019: 24

11/06/2019: 24

10/10/2019: 24

Nurse Assessor’s comments:

Mrs X is doubly incontinent, immobile and severely cognitively impaired. She is dependent on the full assistance of 2 members of staff to assist her to reposition regularly and to check and change continence pads and apply barrier creams to help reduce the risk of skin breakdown. She is assessed to be at very high risk of skin breakdown and is nursed on a pressure relieving air mattress when in bed, and has a pressure relieving cushion for use when sitting out in her wheelchair or armchair. Her position is changed every four hours by staff in accordance with her care plan.

There is no evidence of any open wounds, pressure areas, or skin conditions which require any specific interventions from staff greater than basic care to prevent skin breakdown.

Mrs. X presents with a ‘Moderate’ level of need as she is at risk of skin breakdown which requires preventative intervention several times each day without which skin integrity would break down.

CASE STUDY 2 – MODERATE

Family’s Comments:

Grovers disease. Needs twice daily emollients for dry skin condition

Steroids thin skin. Skin tears almost constantly.

Base of spine very sore requires barrier cream twice day.

MDT Notes:

Has skin condition and needs moisturising twice a day and has thin and fragile skin due to steroid treatment.

Weight loss impacted on her sacrum.

Skin is fragile and thin and dry

Emollient (Diprobase)

On admission had scabbed areas.

Skin is very vulnerable.

Prescribed Epaxiban which can also lead to bruising and requires monitoring.

Prescribed barrier cream, applied after each personal care intervention.

Very high risk of pressure sores. Repositioned 3-hourly

Skin checked twice daily – carers report any issues.

Nursed on pressure relieving air mattress and pressure cushion.

Currently has 2cm x 1cm G2 sore at base of spine, dressed with Inadine and Mepore, responding to treatment.

History of numerous superficial wounds.

Care home records:

01/02/2021: Daily records – Dacktocort cream applied on left upper thigh and groin

03/02/2021: Daily records – Blister on his left upper thigh popped out and put a Biatain dressing on that and done the wound care plan

04/02/2021: Daily records – X’s bottom is sore lbf applied arms sore and slightly bleeding nurse advised X is very unsettled

05/02/2021:  X is very confused this morning during personal care noticed bruise on her left foot nurse informed X’s blood blister on leg had popped cleaned and cream applied pad left open

07/02/2021: Daily records – she remains confused at times but was communicating well. Right arm wound checked and assessed.

15/02/2021: Daily records – Assessed skin flap appeared clean and healthy. Granulation apparent. Cleaned and refreshed as per care plan. No concerns raised. Left hand skin flap assessed.

22/02/2021: Daily records – Dressing came off those morning on left forearm, no sign of infection, Biatain silicone applied.

24/02/2021: Daily records – 5/5 cm wound on left forearm is healed no dressing required

MDT’s Comments:

Mrs. X has a diagnosis of Groves disease, which has resulted in her skin being very fragile and dry, and she is prone to skin tears due to use of steroids. She is prescribed a blood thinning medication which increases her risk of bruising.  She is prescribed emollient creams which are applied twice daily and, due to double incontinence, requires the use of barrier cream to reduce the risk of excoriation, which is applied at each personal care intervention.

Mrs. X is at high risk of skin breakdown due to immobility, poor nutritional status and double incontinence and is nursed on a pressure relieving air mattress and is repositioned 3-hourly with the assistance of 2 members of staff.

Mrs. X has sustained numerous superficial skin tears, bruises and abrasions in the short period of time since admission, some of which have required dressing and regular monitoring from nursing staff. They were noted to have healed quickly and there is no evidence to indicate that the wounds became infected or required any specialist dressings. She is currently receiving treatment for grade 2 pressure damage to her sacrum, which is responding well.

Mrs. X presents with a ‘Moderate’ level of need as she has pressure damage or open wound(s), pressure ulcer(s) with ‘partial thickness skin loss involving epidermis and/or dermis’, which is responding to treatment.

CASE STUDY 3 – MODERATE

Mrs. X suffers from eczema. She has extremely dry, friable skin. She is prescribed Epiderm as an emollient, which is applied twice daily. She is also prescribed hydrocortisone cream to manage exacerbations of her condition.

Mrs. X is inclined to scratch, particularly in hot weather. She needs gentle reminders to try not to scratch, as this increases the risk of infection and deterioration.

Mrs. X’s skin is currently intact and healthy, owing to dedicated efforts by staff to ensure her skin is always well moisturised. Staff check behind her knees and elbows each day, as these are usually the sites that are affected first.

Mrs X presents with a ‘Moderate’ level of need as she has an identified skin condition that requires a minimum of daily treatment, or daily monitoring/reassessment to ensure that it is responding to treatment.

For further reading around the subject on pressure sores:

The dangers of pressure sores, pressure ulcers and bed sores

Take a holistic approach to improve your chances of getting CHC Funding

Does the NHS Safety Thermometer’s findings impact on your relative’s entitlement to CHC Funded Care?

NICE Guidelines – Pressure ulcers: prevention and management https://www.nice.org.uk/guidance/cg179

We hope this has helped you to understand the first three descriptors in the Skin domain. Don’t miss part 2, coming very soon!

If you need help assessing your relative’s level of need in any domain on the DST, don’t hesitate to contact one of our specialist Advice Lines to discuss your case today. If you need expert advocacy support with any stage of your assessment or appeal, visit our 1-2-1 Support page.

If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our “Contact Us” page with the subject “blog request” and we’ll do our best to cover your suggested topic.

This series takes a detailed look at the domains of the Decision Support Tool. This week we examine the descriptors in the Continence domain to help you assess your or your relative’s “level of need” in this important domain.

Don’t miss parts one, two, three, four and five of this series

Get Help Breaking Down The Decision Support Tool: An Overview

Get Help Breaking Down the Decision Support Tool: Breathing Part 1

Get Help Breaking Down the Decision Support Tool: Breathing Part 2

Get Help Breaking Down the Decision Support Tool: Nutrition Part 1

Get Help Breaking Down the Decision Support Tool: Nutrition Part 2

Following the 2018 revisions of the DST, Continence moved “up” from number 7 to number 3. As in the 2012 version, it still follows the Nutrition domain and precedes the Skin domain, highlighting the common interaction between these domains: poor nutrition/hydration is likely to affect bladder and bowels; incontinence is likely to impact on skin integrity. Any interrelation between domains (complexity), and its potential impact on the delivery of care (intensity/unpredictability), should be considered in the analysis of the four Key Characteristics.

The assessed levels of need in the Continence domain range from ‘No Needs’ to ‘High’. Unlike most other domains, Continence does not have a descriptor for a ‘Severe’ or ‘Priority’ level of need, indicating that the management of life-threatening needs in this domain is not performed in a community setting (e.g. bowel impaction or urosepsis, which would require urgent admission to hospital). The vast majority of people being assessed for CHC will fall into the descriptors for a ‘Low’ or ‘Moderate’ level of need. The ‘High’ level of need is reserved for those requiring invasive, skilled procedures, such as bladder washouts, frequent re-catheterisation or manual evacuations (removing faeces from the rectum manually).

The following clinical factors are relevant to the assessment of needs in this domain:

• Can the person go to the toilet independently?
• Are they aware of their need to toilet, or do they require prompts and/or assistance?
• Do they have a stoma (colostomy/ileostomy)?
• Do they experience any urinary and/or faecal incontinence?
• Do they use incontinence products (pads, sheaths)?
• Do they suffer from constipation?
• Are they able to communicate symptoms?
• Do they require aperients? Are these administered orally, or rectally?
• Are aperients effective in managing constipation?
• Is there a history of impaction and/or obstruction?
• Is manual evacuation ever required?
• Does the person suffer from urinary tract infections (UTI)?
• Are these acute or chronic?
• Are antibiotics effective in treating UTIs?
• Do UTIs impact on other domains (e.g. Cognition, Behaviour, Psychological & Emotional Needs)?
• Is the person catheterised? Is this intermittent, or in-dwelling?
• Is the catheter problematic, i.e. does it block, by-pass, leak?
• How frequently does this occur?
• Does the person interfere with the catheter? Does this cause trauma?
• How frequently does this occur?

IMPORTANT – The Decision Support Tool provides the following guidance to the MDT when assessing needs in this domain: Where continence problems are identified, a full continence assessment exists or has been undertaken as part of the assessment process, any underlying conditions identified, and the impact and likelihood of any risk factors evaluated.

This underlines the importance of having clear, dated evidence to confirm any problems with continence, their underlying causes and the risks arising from them. This is particularly important for those receiving care at home, where record keeping is often less robust.

June’s feature on flawed CHC assessments and the importance of good record keeping

Problems with care home records? Mind your language…

Now that we’ve outlined the type of things the MDT will be considering in this domain, let’s take a look at the descriptors for the levels of need. For each descriptor, we provide a case study to give you a better understanding of how the levels of need might be applied at your or your relative’s assessment.

NO NEEDS

CASE STUDY – NO NEEDS

Mrs. X is fully continent of urine and faeces.  She takes herself to the toilet independently and does not require any prompts or assistance to meet her continence needs.

There is no evidence that Mrs. X suffers from constipation or urinary tract infections.

Mrs. X presents with ‘No Needs’ as she is continent of urine and faeces.

LOW

CASE STUDY 1 – LOW

Extract from Care Plan:

Mr. X wears pads day and night. Continent of urine with occasional accidents. Continent of faeces. Mr. x is able to inform staff when he needs the toilet. At night likes to use the commode and a urine bottle in his room.

Mr. X has been diagnosed with Stage 5 kidney disease. He requires Peritoneal Dialysis (PD) via Continuous Ambulatory Peritoneal Dialysis (CAPD) which removes waste products from his blood because his kidneys can no longer do this adequately. Please see Other Significant Needs domain.

Mr. X uses a urinal (bottle) during the day so the staff can measure his urinary output; however, there are frequent accidents when he will spill the contents of the urinal onto his clothes. He requires prompts and assistance to use the urinal at regular intervals throughout the day.

Mr. X will sometimes go to the toilet independently and uses the commode when he needs to open his bowels. He remains continent of faeces throughout the day and night but wears incontinence pads in case of occasional accidents.

A loaded bowel can affect the drainage of the dialysis fluid and it is important that Mr. X does not become constipated. Staff are required to monitor the frequency of bowel movements as Mr. X may not remember to inform them due to impaired cognition and short-term memory loss. Laxatives are prescribed and administered daily with good effect.

Mr. X presents with a ‘Low’ level of need as his Continence care is routine on a day-to-day basis; incontinence of urine managed through … regular toileting …. and he is able to maintain full control over bowel movements.

CASE STUDY 2 – LOW

According to the care staff and his family, Mr. X is ‘fiercely independent’ with his continence needs. His Care Plan indicates that he has occasional urinary accidents, usually during the night, although he will robustly deny this if questioned.

Mr. X is, understandably, very embarrassed by incidents of incontinence and will attempt to hide them from staff; his bed sheets have been found, on occasion, in the bin in his bathroom and stuffed under his mattress. Staff need to be vigilant to ensure his room is kept clean and to handle any incidents of incontinence sensitively and discreetly. Staff check Mr. X’s room every morning while he has his breakfast in the dining room to avoid upsetting or embarrassing him.

Mr. X is currently trialling a Convene (penile sheath) at night due to nocturnal incontinence. Discussions should be had with Mr. X about a range of continence products specifically for men that would maintain his dignity. A referral to the Continence Service has been made by his GP.

Mr X is usually continent of faeces, although has had a couple of accidents when he has been unwell.

Mr. X has a history of constipation and is prescribed a daily laxative with good effect. Mr. X has not suffered from constipation since his admission to the home, likely because he is now taking a regular laxative.

Mr. X presents with a ‘Low’ level of need as his continence care is routine on a day-to-day basis. Incontinence of urine managed through … use of penile sheaths. And may have occasional faecal incontinence/constipation.

CASE STUDY 3 – LOW

Mrs. X is fully continent and takes herself to the toilet independently. She does not require prompts or assistance to meet her continence needs.

Mrs. X has a colostomy following surgery on her bowel five years ago. The stoma is stable and non-problematic. Mrs. X is usually able to care for the stoma and empty the colostomy bag herself, although she may need some assistance if she is feeling unwell or particularly tired.

Mrs. X presents with a ‘Low’ level of need as her continence care is routine on a day-to-day basis; … has a stable stoma.

MODERATE

CASE STUDY 1 – MODERATE

Care Plan

Doubly incontinent. Wears pads day and night.

Completely unaware of toileting needs. Does not indicate needs.

No UTIs.

No bowel problems but is prescribed regular Lactulose once daily.

Nurse Assessor’s comments:

Mrs. X is doubly incontinent and completely unaware of her toileting needs. Staff utilise pads in order to manage her incontinence and provide regular checks and changes of her pads to ensure her comfort and to reduce the risk of irritation to her skin.

She is prescribed regular laxatives once daily which are reported to be effective in maintaining a healthy bowel habit. She does not suffer with recurrent urinary tract infections and there is no evidence to indicate that Mrs X’s continence needs are complex or difficult to manage.

Mrs. X presents with a ‘Moderate’ level of need as she continence care is routine but requires monitoring to minimise risks, for example those associated with … double incontinence […].

CASE STUDY 2 – MODERATE

Care Plan:

Incontinent of urine.

Wears pads

Chronic UTI

Suffers with constipation.

Assessor’s Notes

Incontinent of urine day and night.

Continent of faeces.

Refuses to wear continence pads – will remove and shred pads.

Staff have a toileting regime in place to promote continence which helps somewhat; however, accidents still occur.

History of recurrent UTI, now chronic (E-coli), managed with prophylactic antibiotics.

Treated with Senna for constipation but no chronic history/history of severe symptoms.

No history of bowel problems.

Nurse Assessor’s comments:

Since admission to the care home, Mrs. X’s continence is noted to have declined and she is now incontinent of urine day and night. She requires full assistance from staff to meet her continence needs with the use of pads and regular toileting. She remains largely continent of faeces providing staff take her to the toilet regularly.

Mrs. X dislikes wearing pads and has a tendency to remove and shred them. She requires regular checks to ensure she is clean and dry.

Mrs. X has a history of recurrent UTI prior to admission which, unfortunately, went undiagnosed and untreated for some weeks. She became very unwell and was admitted to hospital with urosepsis having collapsed at home. Investigations while she was in hospital confirmed chronic infection and inflammation of her bladder lining. Mrs. X is prescribed prophylactic Nitrofurantoin to manage symptoms and prevent worsening infection. Staff are required to monitor for symptoms of exacerbation, such as: confusion, disorientation, agitation, poor sleep, frequent urination, discomfort – e.g. holding her lower abdomen, fever, loss of appetite. Mrs. X is sometimes able to communicate her symptoms to staff, but due to increasing cognitive impairment this is not always reliable and she relies on skilled monitoring and anticipation of symptoms by staff who know her well.

Mrs. X presents with a ‘Moderate’ level of need as her continence care is routine but requires monitoring to minimise risks, for example those associated with … chronic urinary tract infections […].

CASE STUDY 3 – MODERATE

Mrs. X has an in-dwelling catheter which was inserted during a recent stay in hospital when she was unable to pass urine for a number of days, leading to her bladder becoming distended. Upon her return home, a trial without catheter was attempted, but had to be abandoned after Mrs. X did not pass urine for over 48-hours and was experiencing abdominal pain.

The catheter is managed by the District Nursing team, who change the tubing every three months.

The catheter has not been problematic to date and Mrs. X has not required any bladder washouts or catheter changes outside routine care, which is provided by the District Nursing team.

Mrs. X is fully continent of faeces and takes herself to the toilet independently.

Mrs X presents with a ‘Moderate’ level of need as her continence care is routine but requires monitoring to minimise risks, for example those associated with urinary catheters […].

HIGH

CASE STUDY 1 – HIGH

Catheterisation records:

Care plan – 17/12/2020:

Occasional continence difficulties during the day and night.

Occasional pain with bowel movement.

Disposable pads.

Nurse Assessor’s comments:

Mrs. X is diagnosed with chronic renal failure and suffers with urinary retention for which she has a permanent urethral catheter in situ. She also suffers with constipation and is prescribed aperients which are effective in managing her symptoms.

Mrs. X’s catheter has been chronically and frequently problematic having required 20 bladder washouts and 9 re-catheterisations in 3 months. She requires close monitoring of her urine output to identify when her catheter is blocked and requires prompt and skilled intervention in order to troubleshoot and provide appropriate care to reduce the risk of pain, discomfort and infection.

Mrs. X presents with a ‘High’ level of need as her continence care is problematic and requires timely and skilled intervention, beyond routine care (for example frequent bladder wash outs/irrigation … frequent re-catheterisation).

CASE STUDY 2 – HIGH

Mr. X is doubly incontinent and wears pads throughout the day and night. He is unable to alert staff to episodes of incontinence and is unaware of the need to void. He struggles to open his bowels now that he is unable to sit on the toilet.

Mr. X has a history of chronic constipation and faecal impaction leading to bowel obstruction. A stent has been inserted into his bowel. Mr. X requires careful management of this bowel to prevent reoccurrence, taking into account the fact that his bowel is now weakened.

Mr. X is prescribed oral laxatives twice daily, as well as a stool softener, which is usually effective in maintaining regular bowel movements. Staff monitor bowel movements closely and administer phosphate enemas if Mr. X has not opened his bowel for more than 48-hours.

If Mr. X has not opened his bowel after two enemas have been administered, staff perform manual evacuation to ensure he does not become impacted. Care records confirm this is required 1-2 times a month.

Mr. X presents with a ‘High’ level of need as his continence care is problematic and requires timely and skilled intervention, beyond routine care (for example … manual evacuations).

We hope this has helped you to understand the descriptors in the Continence domain.  Don’t miss the Skin domain, coming very soon!

If you need help assessing your relative’s level of need in any domain on the DST, don’t hesitate to contact one of our specialist Advice Lines to discuss your case today. Or, if you need expert advocacy support with any stage of your assessment or appeal, visit our 1-2-1 support page.

If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our “Contact Us” page with the subject “blog request” and we’ll do our best to cover your suggested topic.

This series takes a detailed look at the domains of the Decision Support Tool. This week we examine the ‘High’ and ‘Severe’ descriptors in the Nutrition domain to help you assess your or your relative’s “level of need” in this important domain.

Don’t miss Parts one, two, three and four of this series:

Get Help Breaking Down The Decision Support Tool: An Overview

Get Help Breaking Down the Decision Support Tool: Breathing Part 1

Get Help Breaking Down the Decision Support Tool: Breathing Part 2

Get Help Breaking Down the Decision Support Tool: Nutrition Part 1

As we considered in Part 1, the assessed levels of need in the Nutrition domain range from ‘No Needs’ to ‘Severe’. Unlike the Breathing domain, Nutrition does not have a descriptor for a ‘Priority’ level of need. The vast majority of people being assessed for CHC will fall into the descriptors for a ‘Low’, ‘Moderate’ or ‘High’ level of need. It is somewhat unusual for an individual with a ‘Severe’ level of need in this domain to receive care in the community, unless they are nearing the end of their life, due to the risks and complications arising from this type of care.

As we will see, the descriptors for a ‘High’ and ‘Severe’ level of need in this domain often interact with other domains, such as Mobility (positioning), Cognition (loss of feeding mechanics/recognition), Psychological & Emotional Needs (eating disorders), Skin (malnutrition impacting skin integrity, use of cannulae), Continence (lack of adequate hydration/UTI and/or constipation), Breathing (dysphagia/risk of aspiration), Drug Therapies & Medications (palliative care/anticipatory medications). In this way, problems in the Nutrition domain can often result in increased complexity of need, due to the interaction between two or more domains. Any interrelation between domains (complexity), and its potential impact on the delivery of care (intensity/unpredictability), should be considered in the analysis of the four Key Characteristics.

The following clinical factors are relevant to the assessment of a ‘High’ or ‘Severe’ level of need in this domain:

• Can the person feed themselves independently?
• Are all nutritional/hydrational requirements met, or do they need supplementary feeding?
• Are they under the care of the Dietician? How often do they visit?
• Can the person eat normal consistency food, or do they require liquidised meals?
• Does the person require prompts, encouragement and/or assistance to take sufficient food/fluids?
• Does the person require full assistance with feeding? Does this take a long time, i.e. over 30 minutes?
• Any special dietary requirements, intolerances or allergies?
• Weight chart, BMI measurements, MUST (Malnutrition Universal Screening Tool) scores.
• Are nutritional needs met via PEG (percutaneous endoscopic gastronomy) or RIG (radiologically inserted gastronomy)? If so, is this problematic to manage?
• Is there a diagnosis of dysphagia/risk of aspiration? If so, are there any recorded episodes of choking?
• Is the person under the care of SaLT (Speech & Language Therapy)?
• Does the person require a modified consistency diet (soft/mashed/puree/liquid) and/or thickened fluids?
• Is skilled intervention required to maintain an airway, e.g. suctioning?
• Is there evidence of a diagnosed eating disorder (anorexia, bulimia, BID, OFSED, ARFID)?
• Does the individual require subcutaneous or intravenous fluids?
• Does the individual require total parenteral nutrition (TPN)?
• Is the person receiving palliative (end of life) care?

IMPORTANT – The Decision Support Tool provides the following guidance to the MDT when assessing needs in this domain: Individuals at risk of malnutrition, dehydration and/or aspiration should either have an existing assessment of these needs or have had one carried out as part of the assessment process with any management and risk factors supported by a management plan. Where an individual has significant weight loss or gain, professional judgement should be used to consider what the trajectory of weight loss or gain is telling us about the individual’s nutritional status.

This underlines the importance of having clear, dated evidence to confirm any symptoms of weight loss, swallowing difficulties and/or risk of aspiration/malnutrition/dehydration, as the CCG may interpret a lack of this type of documentation as evidence of an absence of need. This is particularly important for those receiving care at home, where record keeping is often less robust.

Now that we’ve outlined the type of things the MDT will be considering in this domain, let’s take a look at the descriptors for the levels of need. For each descriptor, we provide a case study to give you a better understanding of how the levels of need might be applied at your or your relative’s assessment.

HIGH

CASE STUDY 1 – HIGH

Mrs. X is under the care of Speech and Language Therapy to periodically assess and review her swallow. She is noted to have moderate oropharyngeal dysphagia and is assessed by SaLT as being at a high risk of aspiration. She has a delayed swallow and a tendency to pocket food in her mouth. Mrs. X also requires the input of the dietician to ensure she is getting the right nutrients.

Mrs. X has a recent history of chest infections and was admitted to hospital for treatment of aspiration pneumonia in January of this year. She remains at very high risk of further infection.

Mrs. X has frontotemporal dementia (also known as Pick’s disease). Mrs. X has the variant that includes FTD associated with motor neurone disease, which impacts on her muscles. This causes poor muscle control and poor swallow. In 2016, when the condition took rapid hold, she was unable to eat and drink at all. Mrs. X has an advanced directive confirming she does not wish to be fitted with a PEG.

Mrs. X requires a pureed diet and stage 3 thickened fluids. Despite these adjustments, Mrs. X continues to cough and choke on food and fluids. This occurs 2-3 times a week. In the event of choking, staff are required to clear the airway manually and to assist Mrs. X to cough. Suctioning has been required on two occasions since admission to the home, as Mrs. X was unable to clear her airway with maximum staff assistance.

Mrs. X is unable to feed herself. Carers need to feed her food and fluids from a spoon or syringe. She is unable to tolerate the use of a beaker. It is difficult to coax Mrs. X to open her mouth for feeds at times. She clamps her mouth shut and requires lots of encouragement. Feeding is time consuming, and usually takes 40-60 minutes per meal, 3 times daily with a carer on a 1:1 basis. Mrs. X needs thickened fluids to be given on a spoon throughout the day on a 1:1 basis by a carer.

Due to poor cognition and communication, Mrs. X is unable to indicate her requirements for food or fluids. Carers need to monitor and record her intake. Carers need to identify foods that make her cough and to eliminate these from her diet. Mrs. X is not mobile and needs to be hoisted by 2 carers into a chair for meals to ensure she is in an upright position to minimise the risk of aspiration. After meals she needs to be hoisted back to chair or bed by 2 carers. She is not able to assist with these transfers. Due to the impact of Pick’s Disease on her muscles, Mrs. X is often ‘floppy’ and her head drops forwards, requiring the carer to support her head whilst feeding. She is floppy mostly on the right-hand side and needs lateral support to her trunk to keep her in an upright position for feeding (see Mobility domain).

Mrs. X presents with a ‘HIGH’ level of need as she suffers from dysphagia requiring skilled intervention to ensure adequate nutrition/hydration and minimise the risk of choking and aspiration to maintain airway.

CASE STUDY 2 – HIGH

Mr. X is severely cognitively impaired and requires full assistance to eat and drink. He does not suffer any difficulties swallowing but does struggle to take adequate fluids. Mr. X is extremely resistant to prompts and often reacts angrily when staff attempt to encourage him to drink throughout the day. He will push their hands away and throw the beaker if he is able to grab it.

Mr. X has a history of recurrent urinary tract infections and urosepsis, exacerbated by lack of adequate fluids, and has required three recent admissions to hospital with dehydration. On each occasion he has required rehydration with intravenous fluids.

In an attempt to better manage Mr. X’s condition, and prevent further admission to hospital, fluids are administered via subcutaneous infusion twice a week. A butterfly cannula is inserted into Mr. X’s thigh and 2 litres of fluids are administered over a 24-hour period. Mr. X is nursed in bed on these days and tolerates the process very well. He does not appear to be bothered by the cannula and does not attempt to interfere with the equipment.

Mr. X presents with a ‘HIGH’ level of need as he requires subcutaneous fluids that are managed by the individual or specifically trained carers or care workers.

CASE STUDY 3 – HIGH

Weight Record – 2020

January – 68.6kg

February – 65.9kg

March – 63.6kg

April – 62.2kg

June – 60.9kg

July – 59.2kg

Mrs. X has lost almost 10kg since her admission to the home in January and has a BMI of 17. Her family indicated that she was always a fit lady and did not carry excess weight. She was very particular about her dietary intake and was a vegan. Mrs. X is now vegetarian as the home is unable to cater for her dietary preferences, which is disappointing.

The care home records do not indicate a varied diet and consist of processed foods such as vegetarian burgers and sausages. Mrs. X states that she does not enjoy the food and believes it to be unhealthy. She indicated at a recent care plan review that she was fed up with omelettes, which she is served 3-4 times a week.

Care records indicate that weight loss is due to energy loss/ataxia. However, it seems likely that Mrs. X’s weight loss is partially explained by a lack of appropriate, tasty food options.

Mrs. X is under the care of the Dietician who has prescribed Fresubin supplements twice daily. Despite this intervention, she continues to lose weight, although the rate of this has slowed in recent months.

Mrs. X eats a normal consistency diet, but needs her food cutting up, with a plate guard, due to loss of dexterity. She would benefit from adaptive cutlery (right angled) to maintain her dignity when eating. This may also have the effect of increasing intake, as Mrs. X feels embarrassed eating in front of others as she sometimes spills her food.

Mrs. X was observed to be eating with her hands at lunch time as she was unable to coordinate the spoon and food. Mrs. X is a very proud lady, and this loss of dignity and independence is difficult for her and may well be affecting her appetite. The Nurse Assessor has spoken to the registered manager about providing a more varied, healthy diet to Mrs. X and ensuring she is provided with adapted cutlery.

Mrs. X is nutritionally at risk.

Mrs. X presents with a ‘HIGH’ level of need as her nutritional status is “at risk” and may be associated with unintended, significant weight loss.

CASE STYUDY 4 – HIGH

Mr. X has a diagnosis of autism and severe learning difficulties. His condition causes sensory processing dysfunction, which manifests as strong aversions to certain sensations, textures and smells. He has a diagnosis of ARFID (avoidant/restrictive food intake disorder).

As a result of his sensory dysfunction, Mr. X dislikes most foods and suffers intense anxiety at mealtimes. Ongoing problems around food have resulted in significant weight loss and malnutrition. He has a BMI of 14 and is severely nutritionally compromised.

Mr. X is under the care of the mental health team and receives regular therapy; see Psychological & Emotional Needs domain. It is hoped that with time and specialist input, he will be able to overcome his aversions. Mr. X is seen fortnightly by the Dietician who prescribes supplements in an attempt to prevent further weight loss. A feeding tube has been discussed, but due to contraindications and the possibility of worsening aversions, this is considered a last resort.

Mr. X presents with a ‘HIGH’ level of need as he presents with significant weight loss or gain due to identified eating disorder.

CASE STUDY 5 – HIGH

Mrs. X has a Percutaneous Endoscopic Gastrostomy (PEG), and all her nutritional needs are met via the PEG. On admission to the home, she had Jevity liquid feed prescribed which was administered via pump. Unfortunately, Mrs. X was very restless and would knock the pump over affecting its running. Consequently, Mrs. X was not receiving sufficient nutrition; she lost a significant amount of weight and her nutritional status was deemed to be at risk.

Due to ongoing difficulties with the PEG-feed and concerns about weight loss, dieticians reviewed, and the pump was discontinued. All nutritional needs are now administered as a Bolus feed every hour, over a period of 10 hours.

Mrs. X needs to be positioned at a 45° angle whilst receiving the feed to reduce the risk of aspiration. She remains at very high risk of aspiration and requires very careful positioning pre-and post-feed. Mrs. X’s feeding regime is time consuming and complicated. Whilst she was for a period prescribed the feed hourly for 10 hours and this was reduced to 8 hours, she additionally required input for oral feeding and additional boluses of water.

After her feeding regime was changed, Mrs. X put on too much weight, at a rate of 0.5kg per week. The dietician was involved in reducing the feed whilst still trying to retain correct nutritional content. Bolus feed every hour needs to be slowly administered by the RN via a syringe into the feeding tube; the tube needs to be flushed with sterile water before and after each feed, and before and after medications (twice daily).

Mrs. X needs to be put in a 45-degree position for feeds; this requires two carers to put her into the correct position and ensure it is maintained. She needs to be bolstered with pillows as she has a tendency to lean to the left, due to left-sided weakness and poor sitting balance.

Mrs. X remains under the care of the Dietician, who reviews her condition monthly.

Mrs. X presents with a ‘HIGH’ level of need as she has problems relating to a feeding device (for example PEG) that require skilled assessment and review.

SEVERE

CASE STUDY 1 – SEVERE

Mr. X has had a diagnosis of Crohn’s disease for many years and has required various surgical procedures. Following a recent flare-up of his condition, Mr. X required surgery to remove damaged sections of his small intestine (small bowel resection). Unfortunately, this has resulted in complications and symptoms of short bowel disease (SBD).

Mr. X is presently unable to absorb sufficient food and fluids due to damage to his small intestine and is significantly malnourished. He requires total parental nutrition (TPN) via a central cannula to prevent further weight loss and ensure adequate fluids. Due to a high risk of infection and sepsis, aseptic techniques and proper maintenance of the line are vital; please see Skin domain.

Mr. X’s nutritional regime is managed by the specialist Dietician who will visit daily, reducing to weekly providing no complications arise. Nursing staff in the home have undertaken, and will continue to receive, specialist training and direction from the Dietician.

Mr. X presents with a ‘SEVERE’ level of need as he is unable to take food and drink by mouth. All nutritional requirements taken by artificial means requiring on-going skilled professional intervention or monitoring over a 24-hour period to ensure nutrition/hydration, for example I.V. fluids/total parenteral nutrition (TPN).

CASE STUDY 2 – SEVERE

Mrs. X has a diagnosis of stage 4 breast cancer. Sadly, no further medical interventions are possible or appropriate. Mrs. X is approaching the end of her life; the priority is tender loving care, and ensuring her comfort and dignity as far as is possible.

Mrs. X has now entered the palliative stage and is receiving anticipatory medications; see Drug Therapies and Medications domain. She is largely semi-conscious and is unable to take any nutrition or hydration orally. Subcutaneous fluids were discussed, but Mrs. X has an advanced directive confirming she does not wish to receive this type of care at this stage in the disease progression.

Mrs. X requires staff to perform oral care every four hours.

Mrs X presents with a ‘SEVERE’ level of need as she is unable to take food and drink by mouth, intervention inappropriate or impossible.

We hope this has helped you to understand the first three levels of need in the Nutrition domain. Don’t miss the next instalment of the series coming very soon!

If you need help assessing your relative’s level of need in any domain on the DST, don’t hesitate to contact one of our specialist Advice Lines to discuss your case today. If you need expert advocacy support with any stage of your assessment or appeal, visit our 1-2-1 support page.

If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our “Contact Us” page with the subject “blog request” and we’ll do our best to cover your suggested topic.

This series takes a detailed look at the domains of the Decision Support Tool.  This week we examine the first three descriptors in the Nutrition domain and help you to assess your or your relative’s “level of need” in this important domain.

Don’t miss parts one, two and three of this series:

Get Help Breaking Down the Decision Support Tool: An Overview

Get Help Breaking Down the Decision Support Tool: Breathing Part 1

Get Help Breaking Down the Decision Support Tool: Breathing Part 2

The assessed levels of need in the Nutrition domain range from ‘No Need’ to ‘Severe’. Unlike the Breathing domain, Nutrition does not have a descriptor for a ‘Priority’ level of need. While nutritional needs are, of course, important, they are unlikely to result in a critical or immediate risk to life, as in the domains of Breathing, Behaviour, Medications and Altered States of Consciousness and this is reflected in the applicable levels of need.

In the 2012 version of the DST, the Nutrition domain was in the middle of the assessment, after Mobility, at domain number six. The 2018 revisions reordered the domains of the DST, with Nutrition coming second. As we considered in Parts 2 and 3, its new proximity to the Breathing domain (number 1) is important, as individuals who have swallowing difficulties are at higher risk of suffering aspiration (inhalation of food or fluid particles into the lungs). For those with existing breathing problems due to an underlying condition, aspiration is likely to cause increased exacerbations and complexity. While the MDT will consider aspiration risk and breathing difficulties separately, any interrelation between the domains of Breathing and Nutrition (complexity), and its potential impact on the delivery of care (intensity/unpredictability), should be considered in the analysis of the four Key Characteristics.

The following clinical factors are relevant to the assessment of ‘NO’, ‘LOW’ or ‘MODERATE’ needs in this domain:

• Can the person feed themselves independently?
• Are all nutritional/hydrational requirements met, or do they need supplementary feeding?
• Can they eat normal consistency food, or do they require liquidised meals?
• Do they require prompts, encouragement and/or assistance to take sufficient food/fluids?
• Do they require full assistance with feeding? Does this take a long time, i.e., over 30 minutes?
• Any special dietary requirements, intolerances or allergies?
• Weight chart, BMI measurements, MUST (Malnutrition Universal Screening Tool) scores.
• Are their nutritional needs met via PEG (percutaneous endoscopic gastronomy) or RIG (radiologically inserted gastronomy)? If so, is this problematic to manage?
• Is there a diagnosis of dysphagia/risk of aspiration? If so, are there any recorded episodes of choking?

IMPORTANT – The Decision Support Tool provides the following guidance to the MDT when assessing needs in this domain: Individuals at risk of malnutrition, dehydration and/or aspiration should either have an existing assessment of these needs or have had one carried out as part of the assessment process with any management and risk factors supported by a management plan. Where an individual has significant weight loss or gain, professional judgement should be used to consider what the trajectory of weight loss or gain is telling us about the individual’s nutritional status.

This underlines the importance of having clear, dated evidence to confirm any symptoms of weight loss, swallowing difficulties and/or risk of aspiration/malnutrition/dehydration, as the CCG may interpret a lack of this type of documentation as evidence of an absence of need. This is particularly important for those receiving care at home, where record keeping is often less robust.

Now that we’ve outlined the type of things the MDT will be considering in this domain, let’s take a look at the descriptors for the levels of need. For each descriptor, we provide a case study to give you a better understanding of how the levels of need might be applied at your or your relative’s assessment.

Why Is It Important To Check Your Relative’s Care Home Records?

Problems With Care Home Records? Mind Your Language…

Applying for Healthcare Records. Dealing with delays

NO NEEDS

CASE STUDY – NO NEEDS

Mrs. X eats independently and has a normal diet and fluids. Her appetite is good.

She does not have any swallowing problems and her risk of choking is low.

Mrs. X has lost 6.5kg since April 2021; however, she is above normal weight, and the weight loss may be due to the fact that she had recently been prescribed diuretics (March 2021) so her limbs are less oedematous than they were previously.

Weight history

December 2020 – 81.3kg

January 2021 – 81.3kg

February 2021 – 79.2kg

March 2021 – 77.4kg

April 2021 – 74.8kg  BMI 26

Mrs. X has several missing teeth and does not have dentures. However, this does not appear to affect her dietary intake.

Mrs. X presents with NO NEEDS as she is able to take adequate food and drink by mouth to meet all nutritional requirements.

LOW

CASE STUDY 1 – LOW

Mrs. X enjoys a varied diet of level 6 (minced, moist, mashed, bite sized pieces of food) consistency and normal fluids.

It is noted in the Care Plans dated July 2020 that Mrs. X is able to eat independently and is able to use a spoon to eat. However, owing to increasing cognitive impairment, she now becomes very easily distracted and staff are required to prompt and encourage her, and she sometimes needs to be fed. Mrs. X is quite happy to be fed by the staff and is able to indicate when she has had enough food.

Mrs. X needs a great deal of prompting to drink fluids. Food and fluid charts are in place to monitor her intake. Mrs. X dislikes hot drinks and prefers to wait until they have cooled before she will drink them.

Mrs. X’s weight is stable, and she remains slightly overweight.

Weight history

Sept 2019 – 84.6kg

July 2020 – 82kg

August 2020 – 81.86kg

September 2020 – 80.9kg

October 2020 – 81.5kg

November 2020 – 81.5, BMI 29, MUST 0

Mrs. X presents with a LOW level of need as she needs supervision, prompting with meals, or may need feeding and/or a special diet (for example to manage food intolerances/allergies).

CASE STUDY 2 – LOW

Mr. X has a poor appetite. He has a normal, soft consistency diet and normal fluids and is fed and given drinks by carers. Fluids need to be encouraged.

There is no evidence that Mr. X has any swallowing difficulties and there are no reported episodes of choking.

Mr. X was referred to the GP on 22.02.2020 due to loss of appetite, low BMI (17) and a MUST score of 4. Ensure Compact food supplements were prescribed 3 x per day and a referral was made to the Dietician. Mr. X was reviewed by the Dietician on 5.09.19 and 17.10.19: BMI now 19 MUST score 1 – the advice was to continue with food supplements and a fortified diet, milky drinks and snacks between meals.

Weight history 2020

On admission 6.2.20 – 42.3kg (BMI 17)

April 45.3kg

May 46kg

June 49.5kg

August 49.4kg

July 50.6kg BMI = 21

September 49.6kg

October 48.3kg

November 50.6 kg

Dec 51.6kg

Since his admission to the home in February 2020, Mr. X has gained 9.3kg in weight. (1.5 stones). Mr. X is now fed by carers due to declining cognition; however, he appears to enjoy his meals, which he will typically finish within 15-20 minutes. Mr. X’s weight has steadily increased since admission to the home and is now within the normal range. His BMI has increased to 21 and the Dietician reviewed him on 5^th December 2020 and decreased his food supplements to x 2 per day. Mr. X will be reviewed again in January 2021 with a view to reducing the supplements to 1 per day and then discontinue.

Mr. X presents with a LOW level of need as he is able to take food and drink by mouth but requires additional/supplementary feeding.

NOTE – Mr. X has a history of weight loss and low BMI, which might suggest his nutritional status is at risk (‘high’ level of need). However, at the time of assessment, he has gained a significant amount of weight and his BMI is within the healthy range. The Dietician has reduced the prescription of supplements, with a view to discharge in the near future. To that extent, Mr. X is no longer considered “nutritionally at risk”.

MODERATE

CASE STUDY 1 – MODERATE

Weight History

October 2020 – 64.5kg

November – 63.8kg

December – 64.1kg

January 2021 – 62.5kg

February – 63kg

Mr. X has a normal consistency diet with normal thickness fluids. There is no evidence that he has any difficulty swallowing (dysphagia) and he is not assessed as being at risk of aspiration.

Mr. X’s weight is currently stable. However, he has a history of significant weight loss (2019) and was under the care of the Dietician until June 2020. Mr. X has now been discharged by the Dietetics department, but his diet is fortified with additional calories to ensure he maintains his weight.

Mr. X is severely cognitively impaired and is unable to feed himself. He needs to be fed by one member of staff to ensure adequate daily nutritional intake. Mr. X is compliant with feeding but requires much encouragement to eat and drink adequate amounts. Typically, Mr. X takes between 40 and 60 minutes to finish a meal.

Mr. X presents with a MODERATE level of need as he needs feeding to ensure adequate intake of food and takes a long time (half an hour or more), including liquidised feed.

CASE STUDY 2 – MODERATE

Mrs. X is nil-by-mouth and all her nutritional requirements are met via PEG (percutaneous endoscopic gastronomy) . She is under the care of the dietician, who reviews her regime on a regular basis.

1000mls of Jevity feed and 1000mls of water are administered over a 12-hour period, between the hours of 7am and 7pm, per the instruction of the dietician.

Mrs. X needs to be positioned at a 45-degree angle for the duration of the feed and for 45-minutes pre-and post-feeding, to reduce the risk of choking and aspiration.

Mrs. X drools saliva from her affected side and her mouth becomes dry easily. Carers perform oral hygiene to prevent the build-up of mucous and plaque in her mouth.

Mrs. X is assessed as being at a high risk of choking. However, she is nil-by-mouth and has been discharged by the SaLT (Speech & Language Therapy) Team.

Mrs, X’s son reported that on one occasion, when he visited his mother, he found her lying flat and she was choking. The senior nurse stated that Mrs. X had used the remote control for the bed and had inadvertently lowered the head of the bed. The nurse confirmed that the remote has now been removed from Mrs. X’s reach and that staff check on her every 15 minutes while the feed is running.

Mrs. X’s weight is stable, and she appears to be well nourished and hydrated.

Weight history:

31.07.2020 – 64.8kg, BMI = 23

30.08.2020 – 65.8kg

15.09.2020 – 65.8kg, BMI = 24.1

MUST score = 0

Mrs X presents with a MODERATE level of need as she is unable to take any food and drink by mouth, but all nutritional requirements are being adequately maintained by artificial means, for example via a non-problematic PEG.

NOTE – Many people would consider Mrs. X to have a ‘HIGH’ level of need as she is diagnosed with dysphagia (swallowing difficulty and associated risk of choking). However, Mrs. X does not take any nutrition or hydration orally and receives all her food and fluids via PEG. Consequently, her risk of choking and aspiration is drastically reduced, and she does not require skilled intervention to ensure adequate nutrition/hydration and minimise the risk of choking and aspiration to maintain airway (‘high’ level of need).

We hope this has helped you to understand the first three levels of need in the Nutrition domain.  Don’t miss Part 2, coming very soon!

If you need help assessing your relative’s level of need in any domain on the DST, don’t hesitate to contact us or speak to one of our specialist Advice Line Services to discuss your case today.

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